Friday, July 13, 2007

Frequently Asked Questions

Q: Can one touch Joella?
A: Yes. Joella loves to be touched, held, and caressed. Her skin does not blister by regular, normal touching. We are able to kiss her, rub her head to sleep, pick her up by the butt while supporting her head, inspect blister areas, etc. Only concentrated friction affects her skin causing blisters. Common blister areas for her are in the crook of her neck b/c she constantly wriggles, her face b/c she tries to put her hand/fingers in her mouth, and near her elbows due to her moving her arms all over the place.

Q: Will she be able to go outside of the home?
A: Yes. For the first few months, we will mostly keep her at home b/c she will be developing her immune system. In a little while, she will be able to go out wherever we want to take her. It would not harm her to take her outside once we she comes home, but for a while, we want to be conservative in limiting her exposure to infection, etc.

Q: Will she be able to play like a normal kid?
A: She should be. Depending on how her feet heal will determine her mobility, but all indications show she should be able to participate freely in most activities. If she develops a blister, we will just have to spot it and provide the necessary wound care (including moisturizing cleaning lotion and gauze wrap).

Q: Does she look more like her Mom or her Dad?
A: The jury is still out. It depends on the day of the week, and who is asking.

Q: What is her personality like?
A: Sweet as can be.

Q: How are you and Katie going to schedule your time to care for her?
A: Katie plans on returning to work full-time at which point Joe will become a stay-at-home Dad to care for Joella during the day and also work from home. Once Katie returns home from work, Joe will attend classes at Catholic Univ. Law at night. This is the initial plan subject to change. Also, we have hired the Grandma Brigade consisting of Grandma Gale and Grandma Janet for reinforcements.

Quick Update

Joella is bottle-feeding very well. She pulled her own feeding tube out of her nose (she listened to her parents suggestion to do so:-), and the nurses believe this is a good sign for her to rely on the bottle. Her antibiotics seem to be ridding her of the infection. They will run their course until early next week, at which point, we hope, she will not need any more antibiotics. Today, for the first time, her doctors mentioned the idea of her coming home. This was exciting to hear! We shall wait and see!


Kerry said...

I found your blog through a good friend Erin in Sen. Thomas' office. Just wanted to let you know my family and I are praying for you in Chicago, IL. What a beautiful little girl you have.

Anonymous said...

Thanks so much for taking the time to keep updating the blog. It means a lot to all of us out here in "blogland".

Glad to hear the bottling feeding is going well. We are all praying her home! :-)


Darla said...

Hey! We (the basketball squad of Rob, Eric and me) loved the Murray spoting early this morning! We are praying that soon, Joella will be able to accompany her daddy out to shoot hoops on Saturday mornings!

It's ironic that you guys posted these Q&As as Eric and I were talking about these exact questions this morning while shooting around.

God is great and Joella is just one of his miracles!

Love y'all.

Towan1079412 said...

Hello Joe and Katie this is Alicia (Washington,D.C.) I got your message about Joella not getting the surgery, I was so happy to hear that. I was also happy to hear that Katie and you have gone to shuch a wonderful place as Luray Caverns, the children and I had a nice time and thanks for wishing us well. I am so so sorry that it has taken me so long to post. I have been really busy with the boys and all I'm sure you know how that is. I have been thinking about Joella since I saw her, I cant help it, first let me start by telling you she is the most BEAUTIFUL baby! When I saw her I had to use everything in my power not to pick her up and give her a hug, I wanted to tell her that she will be just fine and that I can tell that she was a strong person just for keeping her will to get in this world. I also wanted to let you and Katie know that you two are such wonderful people and are great parents. There was so much love coming from you two and I could tell that Joella wont have to go through the things that I had to endure as a child and I just have to say that I love you both for that. I hope to come see her in the next few days hopping that she will be gone home and that I am to late lol, but just incase I'm not I'll try to get to see her this week coming. My friend Zack tells me to tell you all hello. Hope you all had a good weekend, hug Katie and Joella for us, and I'll see you soon.

"Big Huggs"
Alicia, Washington,D.C. RDEB

The Lairds said...

Praise the Lord -- it seems like she is really doing well! We have been praying for little Ella and your family.
With love and prayers.

Lala said...

Dear Katie, Joe, and Baby Ella,
Just wanted you to know that every night, Cayton and I pray for Baby Ella, Katie, and Joe. She was so impressed with you back in March, that when we think of words that start with K and J, she still says your names. I think even back then she said you would have a girl and name her Ella! ( Every baby's name was Ella!)I have been so moved by your testimony. God is doing might works through all of you. You are all an inspiration to me. We will continue to pray for you!
In Christ,
Laura (Becky's sister) and Cayton

Paige said...

Hooray! We are so glad that baby Ella can come home soon!

Jean said...

Dear little princess JoElla, I talked to your grandma Gale today and she said you were doing better. I wanted to tell you that I have known your mother since she was 2 years old and I am so glad you were sent to her and your daddy to be their little girl. When I pray for you I imagine you running, laughing, skipping and out of pain. Our God is the God of Impossibilities!! Your something special in the Lord's eyes and mine too!! I'll be glad when you go home and sleep in the bedroom mommy and daddy have fixed up for you. I hope the bear that repeats the Lord's Prayer that I gave to you will be able to be put to your ear without it causing a burn. I have a great-granddaughter that was in a car wreck before she was born. She was in the hospital for 8 months and had to have 2 heart surgeries, one at 4 weeks and another before s he left the hospital. She too had to be feed through a tube but she is now 2 years old and doing great. Katie & Jo you are an inspiration to all and I know God will use this in your life to touch others in a very special way. I love the 3 of you.
Jean Brown - Casper, Wy