Tuesday, November 30, 2010

Update

Ellis did well with her procedure yesterday and so far hasn't had any bad reaction to the injections or the anesthesia. We have to wait about a week to see if the botox helps. Today she seems to be a little worn out but generally feeing fine.

Wednesday, November 24, 2010

Thanksgiving

Ellis is twenty weeks old! We had a great Thanksgiving at the Harris House with grandparents Jan & Russell. Ellis was the center of attention and enjoyed playing dress up. (Those pictures are coming soon.) It was easy for all of us to pick what we are thankful for this year. When I think back to all that has happened since last Thanksgiving, I am overwhelmed and humbled by God's mercy and grace. Ellis has certainly had a rough start in life, but we are so grateful for how well she is doing now and are hopeful for the future. Each day she encourages us by meeting more and more baby milestones like rolling over, improved swallowing, and increased range of motion.

Monday Ellis will have botox injections that will temporarily decrease her oral secretions. Her doctors feel this will give her some relief from the constant struggle to manage them and will give Greg and me some respite as well. The procedure is relatively simple but she will have anesthesia again, which makes us a little nervous. We appreciate your prayers.

Here are a few pictures we snapped this week of the sweet baby.



Ellis is not scared of her very tall sock monkey, but doesn't quite know how to play with him yet. When she is a little bigger she will figure it out. (And thanks Malinda for loaning us the bassinet! Ellis loves it.)










Her favorite part of speech therapy continues to be the dum dum suckers. She has figured out how to get them in her mouth all by herself. But don't worry. I keep a good hold on them myself and she doesn't actually get to eat them, just taste a little.








Sleeping beauty




Tuesday, November 23, 2010

Baby Bee


Ellis was so excited to wear her Bee Girl outfit I just had to take a picture. Thanks Joe & Moe! And yes, that is a little yellow tutu!

Thursday, November 18, 2010

Ellis Is Nineteen Weeks Old!


What a big week! We have been back to Cincinnati twice for various checkups and tests and to two other doctors here in Lexington for shots and checkups. Ellis is a pro at it all by now and doesn't seem to mind the disruptions to her schedule. Greg and I also got our first taste of having a sick baby at home with no doctors or nurses around to help when she spiked a fever as a reaction to some anesthesia. She got over it in about twelve hours and was just fine the next day. But yes, I did make that 4:00 am call to the doctor that was inevitable. I figured I talked to plenty of them in the middle of the night in person when she was in the hospital, so why would they mind talking to me on the phone?
The best news we got from her checkups and tests is that both of Ellis's vocal cords are moving now! This is a huge answered prayer. We were told that the right vocal cord would be paralyzed for her whole life. But now it looks like both are moving, so we hope she won't have to deal with any vocal issues and she will have more protection against aspiration. We are so thankful and are confident that God will continue to heal her in many ways. We have noticed that her right eye is also a little more responsive these days and her jaw seems a little more symmetrical, so we are excited that some of those damaged nerves are regenerating.

Ellis also had some very special visitors this week and I managed to snap some pictures:


She loved meeting her grandfather George and Trish! Lots of good cuddles and hugs to go around. And they brought Ellis her newest best friend, a four foot tall sock monkey named Sammy!






Ellis with Doris, her Great-Nan

Wednesday, November 10, 2010

Ellis Is Eighteen Weeks Old! (Tomorrow)

Ellis goes for some tests and checkups tomorrow, so I am writing her 18 week birthday post a little early. I should title this one "Ellis Is Eighteen Weeks Old AND BRILLIANT." At least Greg and I think so. We have been practicing some basic sign language with her since before we left the hospital and in the past couple of weeks we thought we saw some response from her. But now it is official. She has started to mimic our signs, especially her own name and "more." And I think I have seen some definite "Mama" signs in there as well.

Other than that, Ellis has been doing very well at her therapies, especially speech therapy. This has become one of her favorite times of the week since dum dum suckers became part of the therapy routine. It's hilarious. I will try to tape it next week. And no, she doesn't actually get to eat the sucker. But just putting it to her lips encourages swallowing and moving her tongue, so she gets a tiny little sweet treat.

We continue to thank everyone for all the support and love we feel each day. We know your prayers are being heard. Please remember her tomorrow. Some of the tests she will be having require anesthesia and have to be done in the OR, which is pretty routine but unnerving all the same. And to everyone who has brought food by our place, you are absolute life savers and we appreciate each and every meal. It has been such a blessing to us to have this one area taken care of for a while.

Thursday, November 4, 2010

Ellis Is Seventeen Weeks Old!



Ellis had a great week. Except for getting a fever and some aches from her 4 month shots, she has been generally happy and perky this week. She continues to do very well at her physical therapy even though she doesn't enjoy it, and she has so much fun with her speech therapy that she thinks it's a game. Chewing on toys and tasting sweet things can't be all that bad. We are still working to teach her some baby sign language, and I think this week for the first time she has started to try to mimic the signs. I am not positive because a lot of the signs could be easily mistaken for her normal flailing about. But we will keep working with her and hoping she will pick it up soon. Her biggest challenge right now is still handing oral secretions, which equals a lot of extra work for us grownups and some discomfort for her, I'm sure. So we continue to pray that situation will get better so we can get her out and about more. I think it's a little better this week, but she still has a ways to go. We received some more really good news about some of the insurance struggles we have been having, so we are grateful for a little less to worry about.
Trying to get her to smile in pictures isn't easy. The little lady has to be in the mood.
Four generations





Monday, November 1, 2010

Trick or Treat!

Ellis is too little for the candy but just the right size for a costume! This weekend we took our little Wonder Woman to the park for some fresh air and photos.


This little super hero is small but mighty.














Action pose!

















Wonder Woman in her invisible jet!














Trying to eat her Lasso of Truth



















The first time ever Ellis has gotten close enough to a tree to touch it. She was either amazed at its beauty or afraid it might steal her superpowers.















Preparing the model for her photo shoot













Greg introducing her to some more nature
















She loved the sound of the leaves, the sun, and the breeze as much as we loved seeing her dressed up.











All the fun of the weekend exhausted the Wonder Baby. Good thing her grandmother Robin was here to lend a soft shoulder.











Mamma Doris met her great granddaughter!













And as a last note, prayers were answered today when we received some good financial news! We continue to be humbled and amazed how God provides exactly what we need exactly when we need it. Dealing with all the paperwork, insurance companies, and medical bills continues to be stressful, but we are confident that God is greater. Someday I will write a book.