The Goodwins

Ella got a nice present today from her Nana.  A new dolly that can take a bath with her.  She played and held the dolly, fed her the dolly’s bottle and then went and bathed with her.

We needed to change Ella’s bandages which was coupled with a lot of crying and screaming.  So much so that we had to put the arm restraints and “lock her in” behind the tray on her chair.

Of course this didn’t make her happy but it did allow us to get the bandages and headware on Ella.  After we were done I put a similar hat on her dolly which seemed to make her very happy.  I also topped the hat with one of the plastic tubes we use with Ella which seemed to make her extra happy.

The really good news is that Ella’s tube only has pretty clear “drips” in it which means hopefully our friend from our church can come over and help take the drainage tube out this weekend  After that we won’t have to put on anymore headware or bandages!

Bonnie says Ella had a very good day otherwise!

We’ll keep you updated!

Our hearts have been touched by the thoughtfulness of our friends here in St Joseph; always willing to lend a hand or an ear when we need it! Most recently Ella has been showered by fashionable head wear to carry her through the next few months of expander growth. She wore her first fabulous new look out to run errands with mom today, and got all kinds of compliments and smiles!

We thank God everyday for those who have helped to lift our spirits.

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!

I can’t believe how many people love our little girl! Kirk and I have been receiving so much encouragement and so many prayers from everyone that it is almost overwhelming… in a good way that is! It’s as if our little family is living in a giant hug! I’ve always known how precious Ella is to Kirk and I, and our close family & friends, but it is heartwarming to see how far her laughter extends into the world. So with a much lighter heart I send you all one of Ella’s loving smiles and a handful of her kisses! B.