Monday, December 31, 2007

2008 Here We Come!

Ella's first Christmas was memorable and involved much travel in the Bella Minivan mobile. There are some great pictures and a few videos on the right-hand side entitled Christmas 2007 Pictures and videos. Enjoy!

We returned home from our Christmas vacation travels yesterday that brought us from Alexandria to Gordonsville, VA back again to Alexandria for a short bit, then onto Wintergreen Resort, and finally back home yesterday. Spending time with family and great friends was wonderful! In Gordonsville, VA, the Alexander and Murray families celebrated Christmas at the cozy Shenandoah Crossings Resort. Curby and Gina joined Gi Gi, Paw Paw, Katie, Ella, and me throughout the four days at the resort as we huddled into our log cabin, eating delicious food, talking endlessly while the constant sounds of football games on TV echoed throughout, and rejoicing at the birth of our Lord and Savior Jesus Christ's birthday.

After we saw Gi Gi and Paw Paw Alexander off to Reagan Airport on Friday, we got back into the Bella Mobile and headed out to Wintergreen Ski resort in Central VA to spend time with our great friends, Casey and Christy Grubbs. Their little 4 month old, Ginny (short for Virginia), and Ella are friends. They both are so cute together where they just stare at one another and ponder who in the world is that person which looks like themselves. So funny to watch! At Wintergreen we took in the scenes of Mountain living although we did not do much Mountain activity. We did not ski, but rather did the same thing we did in Gordonsville, we just hung out and enjoyed each others' company over excellent food. However, I did get to try out my new Christmas present that Paw Paw Alexander gave me: a .50 caliber Thomson Center Hawken Muzzleloader rifle. It is a beautiful family heirloom which originally belonged to Katie's grandfather. Paw Paw graciously passed it down to me to enjoy and hopefully harvest more game for our freezer. Casey and I made it out to the mountains and fired it a few times into a target. It shoots well.

Speaking of game in the freezer, Katie cooked up the first of what will be many venison meals. For lunch today, she made Venison pepper steak. Yummy! To our delightful surprise, it did not have a gamey taste like a lot of venison meat contains. Needless to say, I was like a kid in a candy store watching her prepare the venison. It is exciting to see what I hunted actually arrive before us in the form of food for the family and good, healthy food albeit. Venison, like other wildlife, is typically leaner with less fat than store bought meat. If you have never tried venison, I recommend you give it a shot (no pun intended:-). You are more than welcome to stop by our place for some as we have over 45lbs of meat stored in our neighbor and friend Becky Brittain's freezer (Thanks for the help, Beck!).

2007 has ended positively for the Murray family! Katie starts her new job on Wednesday, my semester begins next Monday, and our beautful Ella continues to prosper and grow. I used to think it was just a cliche when I would hear parents say that they could see their kids grow up right before their eyes. I no longer believe such, as each day we see Ella doing new things. Recently, she has begun to grab toys, etc. You can see her thinking about what she has in her hands as her imagination expands. Her babbling is becoming more and more like concerted communication. Her weight and length are increasing, and overrall I am convinced she is prettier than the day before.

With her continued growth, Katie and I are experiencing new challenges in protecting and caring for her beautiful skin. She is stronger and able to fight us with more success when we try to wrap bandages on her boo boos which makes the process very difficult. Also, she is giving herself new blisters on her face, ears, and back of her head, everyday. We can't tell her to stop scratching her eyes or grabbing her ears, so we have become more vigilant in putting mittens on her hands while attempting to stop her from scratching herself. However, we are not successful 100% of the time, and therefore, blisters result. In Ella's developmental growth, she has figured out how to get the mittens off. Today during lunch we put mittens on her and while we were eating she seemed to look over at us and demonstrate how well she can grab the tip of the mittens and just pull them off. Then she just held on to them and waved them around her head, just to prove that we couldn't stop her. What is this going to say about her teen years? Anyway, it is a fact of life for EB patients and parents that blisters will occur. It is difficult for Katie and I as we can only do the best we can to prevent Ella from hurting herself. Over time, we are confident that we will rise to the occasion with fresh ideas and strategy on how to help protect Ella from scratching herself and leave the rest up to God to help protect Ella from herself.

You would not know from spending time with her that she is bothered by her blisters. She really does not seem to care, and that is good. She is a normal, happy baby with boo boos is how we like to describe her condition. Really, we are not downplaying the seriousness of EB as a disease. It is just that it appears that rather than being painful, the EB is more annoying to Ella since her Mom and Dad have to pin her down for 45 minutes to an hour each night and wrap bandages on a good part of her body. Throughout each day we constantly monitor her affected areas and make alterations to her bandages if need be. After we are all done, she is either sleeping from being tuckered out from the process or happy-go-lucky. The time in between is spent napping, eating, or playing. Life is good for an infant:-)

It is refreshing to be back home at 5427 Taney and peer forward for a great 2008! We wish all of you a prosperous and blessed year! Thank you so much for standing with Katie and I in spirit. We can't accurately describe what your encouragement and friendship have meant to us since June 21, 2007 (and before), but let us acknowledge that we are blessed to be so loved! Our hope is that we can provide you with encouragement and love when it is needed.


Friday, December 21, 2007

The week before Christmas

Wow, we have a lot to catch you up on. Things have been busy around the Murray house.

First, Monday was my last day of work. It was bittersweet. I will miss the camaraderie in the office and all those good Wyoming folks, but I know this is the best move for our family. The office had a nice going away cake and ice cream party for me, and I also got to go to the office Christmas party after work. It was a good last day.

Second, as you can see from the picture to the right, Santa came to our house. I got a call from Joe to tell me that he had just bought a Santa Suit. So we got Ella all decked out in her Christmas outfit, put the Christmas tree up, and prepared for a visit from the big guy. I think Grammy Janet, Becky and I thought it was more entertaining than Ella did. As you can see from the video, she just kind of sat there. It was almost like she knew it was Joe in that suit. The funniest part came at the end when Joe (aka Santa) couldn’t get his fake boots off. That pleather really sticks to your skin.

Third, Paw Paw came into town on Tuesday. I know Gi Gi missed him, and we were all glad to finally have him with us. For Ella he brought 5 gold dollars. It was hysterical watching her grab them and look at them. She liked that they were shiny. There are also pictures of this. We discovered that Ella really likes hearing Paw Paw sing. I was holding her and Paw Paw was singing Christmas carols. Ella just stared at him and wouldn’t take her eyes off of him. Soon Paw Paw will be teaching Ella how to sing beautifully.

Fourth, this morning Joe officially got a new title…”Deer Slayer!” Joe has been hunting since he was 12 and this morning he finally got his first deer. A big doe. He is very excited about this accomplishment and can’t wait to get the meat. Every time Joe goes out hunting I tell him that if he gets one I’ll learn to cook it. So now I have to live up to my promise and get some good venison recipes. Luckily I know my mom has a few good ones up her sleeve.

That’s about it for now. We’re heading to PA tonight to meet Ella’s new cousin, Andrew. He’s a lot younger than she is, but he weighs just as much. Ella will appreciate her skinny genes when she’s older.

Monday, December 17, 2007

Ode to Joe

It’s Hard to be Cool (In a Minivan) by The Oak Ridge Boys

Sittin’ at a red light, down around Sunset
A girl pulled up beside me in a candy-apple red Corvette
She pulled down her shades, gave me a wink, I gave her a little smile back
Then she laughed as she hit the gas I remembered where I was at

(‘Cause) It’s hard to be cool when you’re behind the wheel Of an eight passenger automobile
In a big bubble, cruisin’ down the street With Barney blarin’ and a baby seat
Hey it can be done, but I’m tellin’ you man It’s hard to be cool in a minivan.

I used to have a souped-up hotrod, Man I spared no costs
284, four-on-the-floor, headers and dual-exhaust
About the time the family came, well, that’s the first thing that went
The preacher said, “for better or worse,” Now I know what he meant

(‘Cause) It’s hard to be cool when you’re behind the wheel Of an eight passenger automobile
In a big bubble, cruisin’ down the street With Barney blarin’ and a baby seat
Hey it can be done, but I’m tellin’ you man It’s hard to be cool in a minivan.

Now, I wouldn’t change my life a bit I’m a lucky man I know
Just wish my wife and kids could fit In a ’67 GTO.

(‘Cause) It’s hard to be cool when you’re behind the wheel Of an eight passenger automobile
In a big bubble, cruisin’ down the street With Barney blarin’ and a baby seat
Hey it can be done, but I’m tellin’ you man It’s hard to be cool in a minivan.

Come on boys, Can I hear an amen It’s hard to be cool in a minivan.

Thursday, December 13, 2007

The Bella Mobile Arrives!

You ask what is the "Bella Mobile?" Answer: A Pacific, Sky-blue 2008 Hyundai Entourage Mini-van.

Yep, you read correctly. Last night, we purchased our first, ever new car as a married couple (and, even when we were single for that matter).

Since Ella was born, we knew the time would come where the need for a family car would arrive. In the last few months, it has become evident that such a need was transitioning into a necessity. Katie traveled the last two weekends with Ella and Gi Gi to a friend's wedding, and to her sister-in-law, Gina's, baby shower, and both trips were over 3 hour drives. Those of you who have kids know that kids travel with an enormous amount of gear (pack-n-play, bags, clothes, toys, etc.) Our small Toyota and Saturn, although great for mpg, just were not cutting it.

When my 1996 Saturn failed inspection last week, we knew the time had arrived to pull the trigger and see what the Mini-van market looked like. A few months back, we were on the brink of buying a SUV, but then realized that with our large extended family visiting so often , a 7 seater-Mini Van was the way to go. On Tuesday, I stopped by a Hyundai dealer in Alexandria, and liked what I saw in the Entourgage.

The Entourage is the similar model to the Honda Odyssey or Toyota Sienna--to the untrained eye, they are twins except that Hondas and Toyotas have a few more bells and whistles and cost 10-15K more. The Entourage received terrific safety, performance, and overrall reviews. Most importantly, the sales guy wanted to earn our business and offered us a deal we could not refuse at an afforded monthly payment price.

Hence, Katie and I strolled over to Hyundai of Alexandria in my '96 Saturn (for the last time in that car), and took our mini-van for a spin. Katie will brag to all that she was the first one to drive our Entourage. We were laughing when we saw that the odometer read "5 miles." Wow, it really was a new car!

We had our reservations about buying a new versus an old car because conventional wisdoms is such that it makes more sense to go with a pre-owned car for devaluation purposes. Yet, our research showed that mini-vans are a unique market--minivan purchasers do not relinquish their minivans as often as purchasers of other makes sense, since most minivan purchasers are in our situation (parents with young kids). They typically drive their minivans until they die. Hence, the pre-owned market we found showed minivans with less than 20-30K miles with a sticker price in the $18-$20,000 range. Well, the Entourage was offered to us at not much more than that price. Plus, they offered a great 10yr., 100,000 warranty on major repairs. All this to say, is that we went new and love it!

We quickly named our mini-van the "Bella Mobile," since Ella is the one who got us thinking about a minivan and the color of it matches the color of Ella's beautiful, bold eyes.

We look forward to having you take a spin in it with us!

Note: This is not a commercial advertisement for Hyundai, and we are not receiving any incentives to blog about their products. Heck, though, if you are in the minivan market, we suggest you give them a look.


Wednesday, December 12, 2007

Tis the Season for school to end

Finals are over…let the partying begin! Joe had his last final on Monday. Now I get to adjust to having him home at night, and Ella gets to adjust to not having his nose in a book all day. It’s nice.

Ok, so I need some advice. Ella is almost 6 months old and is still not sleeping through the night. We don’t know what to do. Usually she will sleep for 4 hours (sometimes 5 or 6 on a good night) then after that she wakes up every 2 hours. We think she might get all worked up from her bandage changes then has a hard time settling down, but even when we don’t change her boo boos at night she still won’t sleep through the night. And we thought that maybe she was hungry and once she started eating solids it would help. Not so much. And most of the time she won’t even eat when she wakes up. She just keeps the bottle in her mouth for a couple seconds until she falls back asleep, or we just pick her up and bounce her and she goes right back to sleep. The Dr. recommended moving her into her own room (we are paranoid parents so Ella was still sleeping in our room until about 3 weeks ago), so we did that and it hasn’t helped. We can’t do the typical suggestion of giving her a bath at night to calm her down. So we don’t really know what to do. Any thoughts are greatly appreciated.

So God has answered another major prayer! I’ve shared before how working in DC hasn’t been easy on us as a family, and Joe and I have worked to make the adjustment. Even my office has bent over backward to accommodate me, but it just wasn’t working. Well, I have gotten a new job right here in Alexandria. My new office is exactly 1.1 miles from our house (I turn left then turn right). I will be working as a lobbyist for the American Diabetes Association and I am SO EXCITED!!! I will be getting 2 hours a day back just by not having to commute into DC. I will still do a lot of my work from the hill, but hopefully I can avoid rush hour traffic (no more sitting on 395 for an hour just to go 9 miles). I officially start at the beginning of the year, and my last day with Senator Barrasso is December 17. I am taking 2 weeks for Christmas vacation. God has really answered a huge prayer request with this job. He is so good!

So I’m wrapping up my last week here with Senator Barrasso. I can’t believe that it has been almost 5 years. It has been such a pleasure working for both Senator Thomas and Senator Barrasso, and I loved having the opportunity to represent Wyoming here in the US Senate. I will miss my office and all of the Wyoming connections, but “There is a time for everything, and a season for every activity under heaven” (Ecclesiastes 3:1). Thus, it is time to move on to the next adventure.

Lastly, we have new December 2007 photos and videos on the right-hand side.

Blessings to you all this Christmas season!

Tuesday, December 4, 2007

Rockstar Ella

Our Daughter is a Rock Star! We went for Ella’s 5 month check up last week and it was proven that Ella is a rock star. First, she gained 5 ounces in a week, so she’s up to 13 lbs 10 oz. Second, when the nurse gave her the vaccines she whimpered just a little bit and that was it. She didn’t burst into tears or scream for her mom and dad. She just whimpered out of a bit of discomfort, then started playing with her block. We dressed her and left and that was it.

As Joe mentioned, Gi Gi is back in town to help with Ella while Joe takes his finals. She has the morning shift and Metti has the afternoon shift. I kept trying to prepare Ma that she wasn’t going to be able to get much done. Ella likes a lot of attention and it’s hard to get a lot done in 15 minute increments. Monday was Gi Gi’s first day on the job and I think she found out exactly what I was talking about.

Over the weekend Gi Gi, Ella and I got to go to a wedding in beautiful Hot Springs, VA. My good friend, Linda Rouse, tied the knot at a resort called “The Homestead.” This was very fancy, to say the least. We pulled up and Ma and I, being the country bumpkins that we are, had no idea what to do with the valet parking. We just sat there and stared at each other. And I’ve never been to a hotel where we didn’t have to carry our own bags. The wedding was beautiful and the reception was a ton of fun. Gi Gi took care of Ella so I could go to the reception and dance the night away with my friends. Poor Joe was home with his nose in a book. I missed my dance partner, but he did what he had to do.

The only bad part of the weekend was that Ella, for some reason, had a hard time sleeping. She went to bed at a normal time, but woke up at 3 am crying. She cried for 3 ½ hours before she finally fell back asleep. Sunday night she didn’t sleep well again. She was up about every hour. Last night was a bit better. I’m convinced she’s getting her first tooth. Ma and Joe think she just has a cold. All I know is that she’s fussy, drooling a lot, and has a runny nose. Then again, she has been on some pretty strong medicine, so that might have a part to play. I guess only time will tell.

Friday, November 30, 2007

The Return of Gi Gi

Gi Gi is returning back to town this afternoon from Casper, Wyoming.

I have finished classes for the Fall semester and have final exams on December 4th, 6th, and 10th. Her presence will help free me up to study, provide Katie help with Ella, and overrall, allow us to share her great company.

We look forward to her arrival!


Monday, November 26, 2007

Gobble Gobble

Wow, we have so much to report! It has been a very busy week. I’ll start from the beginning so sit back and get ready to read because this is going to be a long post. Before I go any further we need to let you know that Ella has gained another pound. She is now officially 13 lbs 5 oz.

On Tuesday night Joe and I had the opportunity to speak at our church Thanksgiving dinner. Apparently every year they ask someone to speak about what they are thankful for. Obviously we have a lot to be thankful for, so they asked us to speak this year. We are thankful for so much, that we decided the best way to keep things concise was to do a top 10 list. However, we weren’t able to keep the list to just 10, so we had our top 14. Here they are in no particular order.

We are thankful for:

1) All of the love and care from God’s church in our time of need—food deliveries, prayers, notes, visits and encouragement.
2) A chance to bring our two families together.
3) God showing us the skills and patience required to care for our daughter.
4) The opportunity to share about how God attends to our needs and comfort us in our time of need.
5) For the story Joella will have to tell as she grows.
6) Our deacon, Becky Brittain – Beck has earns a lot of deacon points with us.
7) That God’s word is true. Rom. 8:28 – For we know that in all things God works for the good of those who love him, who have been called according to his purpose.
8) New friendships.
9) Strengthening of old friendships.
10) Bringing us closer together as a couple.
11) God’s miraculous healing power on our little girl.
12) The hope that her condition will resolve itself in the next few years.
13) The incredibly talented and caring medical staff and nurses at Children’s National Medical Center, Inova Hospital where Ella was born, and her current pediatrician and dermatologist.
14) God blessing us with the most precious gift we could ever imagine.

The talk went well and I’m so glad we got the opportunity to share our story and how God has worked a miracle.

Wednesday morning at 3:00 am we packed up the car and headed to Baltimore Washington Airport. We took the 6:00 am flight to Dallas/Ft. Worth to visit family for the week. Once we arrived we were walking to the baggage claim area and spotted my mom and dad (GiGi and Paw Paw) and my Aunt Gail and Uncle Clay waiting for us. Aunt Gail was the first to spot us. She let out a yelp, then started running to the door we were walking through. It was so funny because she left the rest of the family in the dust. Everyone else quickly caught up and soon there were tears galore! Ella just kept looking at them like “Who are you and why are you crying?” It was a great moment, one we thought we’d never have.

We had breakfast at Uncle Clay and Aunt Gail’s house so that Ella could get on the floor and stretch her legs. She needed to play after that long plane ride, and we had another 4 hour drive ahead of us. After breakfast we headed to Shreveport to visit Maw Maw, my paternal grandmother. We spent the rest of Wednesday, all day Thursday and Friday morning with her. Dad took Joe and me to the casino river boats for a buffet dinner on Wednesday. Who would pass up all you can eat shrimp? Yummy! Thursday Mom and Maw Maw fixed a fabulous Thanksgiving meal with all the trimmings! Friday morning Joe and I met up with some of my friends for breakfast.

A little side note because this is just too weird. My friend, Jenny, and I worked in Boston together for Hearts for Boston. Jenny married Jed (I was in their wedding) and they lived in Arkansas until about 6 months ago when they moved to Shreveport. I haven’t seen Jenny and Jed since their wedding about 7 years ago I think. So we got to meet up with them for breakfast and their twins, Malcolm and Naomi (so cute!!!). Ella was of course wearing her Mets hat, to which Jed said, “I like the hat.” I asked if he was a Mets fan and he said he was. Then Jenny said that Jed was from New Jersey. Joe asked the standard question “What part?” Typically when Joe asks this question people are from north Jersey, but Jed answered “The shore.” So Joe continued, “What part?” To which Jed responded, “Monmouth County.” This led to the discovery that Joe and Jed actually went to High School together, and Joe was only a year older than Jed. Isn’t that crazy! What a small world.

Ok, so back to our weekend. We left Shreveport Friday afternoon and headed to Texas so little Ella could finally meet big Ella, who she is named after (see new video under November 2007 Videos). It was nice to have some play time with just the Bigs (Big Mama and Big Daddy) so they could see Ella and not have to deal with giving attention to other people. The 3 men watched the end of the LSU vs. Arkansas football game while the 4 generations of girls stayed in the living room. There are pictures of the 4 generations, but obviously we need to learn how to use our camera because most of the pictures are blurry.

Saturday was the ever famous Gooch Wing Ding (that’s a party for you non-southerners). Uncle John and Nancy Jane have this Wing Ding at their house every year the Saturday after Thanksgiving. It’s a great time with great food and great company. This year they served up barbeque ribs and sausage with all the sides you could want. Before the Wing Ding Joe got to do some target shooting with Uncle Clay, my Dad and cousin Hal. Of course he loved that! What was hysterical was that Uncle Clay and Aunt Gail were trying to find some clothes for Joe to wear shooting. They pulled out a pair of Wranglers which were just a bit too tight (see pictures), cowboy boots (I bet Joe’s family never thought they’d see him in those), and topped the look off with a traditional cowboy hat. YEE HAW!!! The Wranglers were too tight, so he ended up wearing another pair of jeans that fit better.

Sunday we rested in the morning, then had Mexican food for lunch. At 3:00 pm we headed to the airport for the flight home. Ella did great on both of her plane trips. On the way to Texas she slept the first half and played the second. On the way home she played the first half and slept the second. All in all she was a great traveler. Now we just need to get ready for Christmas, although we’re sticking closer to home for that.

We hope you and yours had just as wonderful of a Thanksgiving as we did.

Sunday, November 18, 2007

Ella's New Friend

Just a quick update on the famous girl in the family. That’s Ella, for those of you who were unsure. God answered yet another prayer for us last week. Ella was approved to receive Medicaid benefits, thus providing us with home health care. Needless to say, the schedule we had just wasn’t working. Basically, I worked all day while Joe was home with Ella trying to squeeze studying in during naps. Well, Ella isn’t much of a napper, so that wasn’t working out so well. If he was lucky he’d get an hour or 2 of studying in, and that’s not anywhere near enough for law school. Then Joe would load Ella up and he and I would meet half way between home and my office to do the switch off. We met in a parking lot in Pentagon City where we’d move Ella from Joe’s car to my car, say hi and goodbye all in one breath, then part ways once again. If I was running just a few minutes late or got caught in traffic, then Joe would usually end up being late to class. And all this happened to fall right in the time Ella likes to have her early evening snack and quick nap. We learned very quickly that this wasn’t working! Both of us were stressed to the max!

Ella got approved for Medicaid and within a few days we had home health care in place. Metti started last Monday and she has been a complete God-send. By the second day Joe and I both felt like an enormous weight had been lifted off of our shoulders! Joe is no longer stressed about study time because he knows that every afternoon Metti is going to be here to care for Ella and he can get some good studying in. This also makes their time together in the morning much more quality. I no longer stress about leaving work exactly on time and getting caught in traffic and ultimately making Joe late for class. I know that Ella is safe in her own house with Metti. The best part is that every night when Metti leaves she kisses Ella’s head and says “I will miss you!” That is exactly what a mom wants to hear.

My only worry with having Metti around is that Ella is going to get used to being the center of attention. I think she already has gotten used to it!

Wednesday, November 14, 2007

Celebration of Laura Moutray's Life

Yesterday, our friend Laura Moutray lost her year-and-a-half battle to breast cancer. We were saddened to learn that she had passed away leaving behind her wonderful husband Chad, and their beautiful little 2 year old, Charlotte. We met the Moutray's right after our Ella was born through mutual friends at Church, but in the few months since that time, we sensed a stronger-than-usual friendship bond between our families.

Chad mentioned on a few occasions how uplifting it was for Laura to follow on about Ella and her progress on this blog, and we all got together for pizza one Sunday afternoon about six weeks ago just to hang out. We are grateful for the time we spent with Laura and for knowing that our beautiful, precious little jewel made Laura happy.

Chad mentioned he and their entire family are comforted knowing that Laura is in a better place in heaven as the cancer had caused her significant suffering.

We pray for Chad, Charlotte, and their entire family asking God to bless them with comfort during this grieving time.

Monday, November 12, 2007

Fingertip Tribute

Several months ago Ella got a blister under her finger nail. It was her index finger on her right hand. A few weeks later the finger nail fell off completely. In telling my mom about it I told her that I’m not really worried about the loss of the finger nail, that is minor in comparison to other things. My worry is that she will be self-conscious about it. I don’t want her to spend her whole life hiding her right index finger. In response, my mom was inspired to write this poem as a tribute to Ella’s finger. The funny thing is that a couple of weeks ago Ella decided that she no longer liked her pacifier. Instead she has taken to sucking on her finger without a finger nail. Joe and I don’t worry because we know she can’t scratch up the inside of her mouth. The finger nail may or may not grow back, only time will tell.

Fingertip Tribute

Written for Joella Gale Murray by her GiGi
November 4, 2007

When God made Ella, He had in mind
Not the usual girl, but one of a kind.

Between serious brow and the tip of her toes,
Are intuitive blue eyes, and a cute, perfect nose

Round kissable cheeks and fat little knees
Go with a heart that beats ever to please

A broad, winning smile and an enchanting giggle,
Go with two arms and two legs that are eager to wiggle.

He molded two hands with ten fingers of grace,
So she can reach out and touch and embrace

She holds tight to the fingers of Mom and Daddy
To prove how determined and strong she can be

For, when God made Ella, He knew all along
She’d inspire others to be just as strong

And He planned that one precious finger would be
The sign of His touch so that others could see

So…Don’t be embarrassed and don’t be ashamed,
Your finger will help folks remember your name

When all of your body is healthy and healed,
Your finger will prove that prayers are for real

If some say miracles never can be,
Shake your finger at them and say, “Hey! Look at me!!”

God put His mark on you, Joella Gale…
Gave you life to the full, and a story to tell.

Sunday, November 4, 2007

Two New Firsts

Ella has had 2 more “firsts” this weekend. The first first, if that makes sense, is that Ella has her first diaper rash. Sad but true. I guess we should count ourselves lucky that she made it this far without diaper rash. And the truth is that the only reason she has any now is because she had to be put on a medication that gives her diarrhea, and thus has given her diaper rash. It was only bad for 1 day, and we kept cloth diapers on her and changed them at least every hour. It was much better yesterday and is even more improved today. Hopefully by tomorrow it will be all cleared up.

Ella’s second “first” is much more exciting. Today Ella had her first cereal! It was probably more exciting for mom and dad than it was for her. Of course we captured it on video, which you will find in “November 2007 Videos” and "November 2007 Photos." She did pretty good considering she didn’t really know what it was or what to do with it.

Ella is now laying on her blanket talking to herself and playing with her blocks. Every so often she’ll go quiet and when I look over to see what she’s up to she’ll start whining wanting to be picked up. She has figured out that mom and dad will pick her up if she whines, so when we check on her we have to be sure to look out of the corner of our eye and be sure not to make eye contact. Otherwise its over. See…she just caught my eye and now is sitting in my lap while I finish this post.

Thursday, November 1, 2007

Halloween Time!

Yesterday was Ella’s first Halloween! I didn’t go out any buy her a costume, but she did get to wear a special outfit with pumpkins on it, her pumpkin socks and of course her pumpkin hat. She looked very cute! Unfortunately we didn’t get any pictures of her in her Halloween outfit, but we do have pictures of her from the day before Halloween in her pumpkin hat and shirt. There are also pictures from the Ella Fund event last week. Since I’m a professional photographer all of the pictures came out blurry, but you’ll get the idea.

Ella’s first Halloween was a day of both excitement and sadness. Unfortunately both took place at the pediatrician! The exciting part is that Ella continues to grow. She’s on the steady track of about 1 pound a month. According to her pediatrician, Ella weighs 12 lbs 5 ounces and is 25 inches long. This puts her in the 25th percentile for weight, the 75th percentile for length, and the 100th percentile for cuteness!

The sad part was that she had to get yet another round of shots. Those things are brutal! And I almost flipped out because after her shot the nurse put a band-aid on her! Of course I immediately reacted and told her that she couldn’t have band-aids on her skin. It was quickly removed and as of last night she didn’t have a new blister from the band-aid, so that is good news. It was just proof that we always have to be aware of what is going on.

As far as Ella’s first Halloween night, I had visions of what it would be. I would be holding her in the Baby Bjorn with her cute pumpkin hat on…we’d open the door to the trick-or-treaters…she’d look at all of the exciting cosumes…they’d ooh and aah about how cute she is…I’d just smile and say “thank you” while happily filling their bags with yummy candy. Unfortunately the shots made Ella sleepy, so she peacefully slept through her first Halloween night while I sat downstairs with the trick-or-treaters. Oh well. Maybe next year will be more exciting.

Monday, October 29, 2007

Miracle Worker

Aunt Ellen came to visit last week (she is the 3rd oldest of the Murray kids). It was great having her here to hang out and spend time with Ella. She was GREAT with Ella! Maybe it’s the name connection.

I should let you all know that Joe and I are a bit paranoid with Ella. Maybe rightfully-so, but we rarely let people hold her, and when they do we don’t venture too far out of fear that something will happen and we will need to nab her back. Mostly we’re afraid of her getting hurt, but Ella also tends to “freak out.” She will start screaming and wriggling all over the place. She’s a good baby for the most part, but when she’s not happy she makes sure everyone knows it!

So Ellen came to visit and jumped right in to help out. From the first day she was so good with Ella. She could get her to fall asleep without using the bottle, which is a miracle in our book! Ella is a sleep fighter, so we were shocked when Ellen could lull Ella to sleep without a fight! She also knew how to hold Ella the way she likes…facing out so she can see the world, yet snuggled in so that she knows she’s protected. Ella didn’t really cry with Ellen. She just kind of chilled out.

Joe and I wish we knew Ellen’s trick. Maybe she is just more patient than we are. Maybe Ella just likes her better. Who knows? All we know is that for 4 days Ellen was a miracle worker with Ella.

Of course Joe and I never actually cooked for Ellen. The closest she got to eating a meal at our house was having toasting an English muffin and Joe making coffee. The rest of the meals we either ordered in or went out to eat. I really do know how to cook. Granted, we usually eat meat and veggies, but I don't know how to cook a steak without burning it.

For those of you who don’t watch TV, or just don’t care about baseball…the Red Sox won the World Series!!! Woo Hoo!!! I am a Red Sox fan, so I am very excited about this win, but I will say that I’m a bit disappointed with them sweeping the Rockies . I’m a western girl, so there was a part of my heart that really wanted the Rockies to win, or for them to at least give the Sox a “run for their money.” Oh well, I’m glad the Sox won and that nasty curse is ancient history!

Friday, October 26, 2007

A Sincere Thank You

This past Monday night, friends hosted a reception event to honor Ella which truly touched Katie and I so dearly. The event's main purpose was to raise money for Ella's as well as for any other child with EB in our church medical expenses (currently, Ella is the only child in our church with EB) not covered by insurance. There were terrific silent-action items that people bid on, and the event was a huge success raising approximately $30,000. We were incredibly floored by this outpouring of love and generosity! Words cannot express how much this effort means to us!

There were many caring people who lended a hand in putting the event together (from gift sponsors to volunteers), and we would like to specifically mention and thank a few who led the effort:

Karen Johnson, my former colleague at Valente & Associates, was the brain-child of this event. From the day Ella was born, she had been diligently scheming to create such an event to help us out. Like many, she loves little Ella, and felt compelled to lead the charge to seeing this event culminate in what it did. She enlisted the interest of others who comprised a host committee including Mike Bell, another friend and Valente & Associates colleague; Amber and Jeff Burton, Eric Dell, Jim Ellis, Scott Fleming, Mike Gula, Joe Rachinsky, and Mike Gula. All of you are such wonderful people and cherished friends!

Others who played an instrumental role in the event include Mark and Claudia Valente, my former boss, who opened up the 9th floor penthouse of the office to host the event; Katie Horgan, Rachel Evans, Jenni Stein, and Beth (i forget your last name, sorry) who all worked so hard to ensure that the details of silent-auction items were in place, guests had nametags, and overrall, all necessities were in place.

We can't forget to thank the hundreds of you who contributed to the event by mailing in a check. Thank you from the bottom of our hearts! These resources will help us cover Ella's hospital bill as well as a very expensive genetic test that we hope will provide us a more clear medical prognosis of Ella's EB.

One of our favorite Bible verses is, "Where your treasure is, there lies your heart." We know that the hearts of many our with Ella and her Mom and Dad!

As for little Miss Ella, she was dressed to the 9’s in a beautiful navy blue dress with a pink onesie. It had ballet slippers on it! She acted pretty good considering it was nap time. She did ok for the first 2 hours, then she was done. As soon as Joe sat down to feed her she fell asleep and slept through the drawing and presentation of the auction winners, and Barbara’s talk about EB.

As far as life with Ella, she is really enjoying her voice. It’s hysterical! She makes all sorts of noises in a wide variety of ranges, and she even seems to carry on a conversation with us. We will start talking with her, stop, and then she starts talking. And she has started chewing on her hands. This poses a problem because she gives herself blisters on her fingers. We try to keep mittens on her hands, but she has figured out how to get them off. It’s so funny to watch. We put the mittens on…she rubs her hands against her sides until the mittens come off…we put the mittens back on…she rubs her hands again. We have a smart kid.

Not much else to report on the home front. Joe is in the thick of classes, and I am back in the swing of things at work. We’re both exhausted and wonder when Ella is going to start sleeping through the night. The bad news is that I was 2 years old before I slept through the night, so it may be a while.

Wednesday, October 17, 2007

What's In a Name

When Joe and I were discussing baby names we didn't put too much emphasis on their meaning. We were going to name a boy Alexander because that was my maiden name, not because it means "defender of men," although that would be a great name for the future President of the United States . So when we decided on the name Ella it was solely because that is my grandma's name and we liked it. And the night before Ella was born Joe and I started discussing the name Joella. It wasn't until she was born that the decision was officially made (although I think adding the Jo was in Joe's plan all along). Joe took one look at her and said, "Her name is Joella...she looks like a Joella.". It wasn't until later that we found out that Joella is the female version of Joel, and it means "Jehovah is God!" What a powerful name! And how appropriate for our little girl.

Saturday, October 13, 2007

Ella's New Toy

No, Joe and I didn’t go shopping and find the most magnificent toy since the music playing turtle. This is a toy Ella discovered all on her own. It’s her voice and she loves it! Sometime between Tuesday and Wednesday Ella figured out that she can make noises…lots of different noises. It’s hysterical. She just lays on her blanket and talks to herself, then she’ll smile about all of it, and start talking again. There is a new video showing her talking. She does this funny lip thing where she sticks out her top lip and tucks her bottom lip in. Now she talks all the time (I don’t know where she gets that) and this morning she started squealing. We have a funny kid.

Wednesday I came home for lunch and while Ella and I were playing she let out the cutest little giggle I have ever heard! I almost cried. I just can’t believe that we thought we were going to lose her, and now she’s growing and developing so much. God is so good! Joe said that she had giggled at him earlier in the day while he was changing her diaper. Of course I've been trying to get her to giggle ever since, but it isn’t working out so well.

On another note, we had family pictures taken yesterday. It was a lot of fun. The photographer came to our house and took pictures around our house, then we walked down the street to the park and she took more pictures there. Of course Ella didn't smile once the whole time she was here! As soon as the photographer left Ella took a 2 hour nap and woke up all smiles. Luckily I was able to catch some good pictures of her smiling. You can find those in the October photos section.

We also want to welcome Andrew Jarrod Quigley to the world! Joe's sister Katie, and her husband Jarrod had a baby boy on Thursday October 11. We are very excited to welcome this little guy into the family. The last 4 additions to the Murray clan have been girls, so I know the boys are excited to have another boy in the bunch. This also makes the Murray grandkids an even 10. Grammy Janet sure has her hands full.

Tuesday, October 9, 2007

Not so fast

I knew it wouldn’t last. Ella only slept in 3 to 4 hour sections on Saturday and Sunday nights. I miss those 6 straight hours of sleep. Sure it only happened once, but it was love at first sleep! She did, of course, take a 3 hour nap yesterday, so what she didn’t sleep at night she made up for during the day.

Joe and I got a little reminiscent this weekend. We took Ella to walk along the Tidal Basin where Joe proposed to me. She loves being outside and looking around. We think she had a good time. I’m sure she’ll visit this place several times throughout her life. The weather was absolutely beautiful! Very un-fall-like. I’m torn because on one hand I really like the warmer weather, but on the other hand we have all of these cute fall clothes for Ella and she hasn’t been able to wear any of them! The good thing is that she can continue to wear her cute summer clothes.

What is going on with all of these recalls lately? Ella is almost 16 weeks old and already I’ve had to check for recalls on 2 of her things. Luckily neither of them were recalled because they were new enough models, but I can’t help but wonder what other things she might have that are dangerous and will be recalled soon. What if…heaven forbid…her favorite music playing turtle gets recalled! What would we do? Luckily her hands can’t get recalled and for now that’s all she chews on.

Saturday, October 6, 2007

6 Hours!!!

WOO HOO!!! Ella slept 6 hours straight last night! That is the longest stretch of sleep she’s ever had. It probably won’t happen again tonight, but it was nice that we got a full 6 hour stretch of sleep. Then when she woke up at 4:30am, she ate and went back to sleep for another 4 hours!

We’ve added some new pictures and video of Ella in her new Washington Nationals outfit, thanks Aaron Chang. He hooked Ella up with her cute outfit, and another one for next year, and the Nationals bear that you see in the pictures. Aaron commented that he was tired of seeing the Mets onesie all the time.

On another note, Joe has joined a fall softball team. For those of you who don’t know Joe, he is a huge baseball fan (if you couldn’t tell from the Mets outfit). During the summer he plays on one of our church softball teams (FBCA #2…who won the championship I might add), so for the fall he was recruited to play for a team at his school, Catholic University. Having the baseball history that he has, Joe takes softball very seriously. He gets out there and has a lot of fun, but is willing to “go the distance” for his team. Over the summer this resulted in a white t-shirt that ended the season a nice clay color, a torn pair of workout pants, several pair of clay stained socks, and a severely scraped up knee. Unfortunately while playing for his fall team last week Joe dove to catch a ball, and ended up scraping his knee all up. Of course its much cooler to just let the wound “air out” than it is to protect it with a band-aid, so his scraped up knee got blood all over our white sheets! I know what you’re thinking, we shouldn’t have white sheets in the first place. Well, the nice thing about white is that I can bleach all the blood out. Today he came back from softball and his wrist is all bruised. At least a bruise won’t bleed all over our sheets.

Thursday, October 4, 2007

She's Growing!

To your right you will find a new picture category, October 2007 Photos. We decided that the other folder was getting a bit packed, so we’d start a new one for each month. Ella is still as cute as ever! My favorite picture is the one of her yawning. The dress and hat outfit were a gift from a couple in our church, the Bull’s. There are also a couple of new videos. She’s getting so long!

We had a big breakthrough this week! Ella’s right foot is all healed and looking fabulous, so we decided to take a major risk and not wrap it and see how things held up. We did put Mepilex on the heel (its this padded foamy stuff that protects her skin), and put a nice thick and soft sock on her foot, then put a little bit of tubifast (the things that look like tights that hold all of her dressings in place) on the shin to make sure the sock doesn’t fall off. So far its been 3 days and things seem to be looking good. She did get a little blister on the top of her foot from kicking, but all in all it seems to be working out well. Now we just need to get the left leg in the same position. It’s doing well, but not as good as the right foot.

Ella has also gotten used to taking baths. She cries for the first 30 seconds, then realizes that she likes the water. The worst part is probably taking her out of the bath. We wrap her in a towel the best we can, but she still gets cold and starts crying. Of course we do what we always do, shove a bottle in her mouth.

Friday, September 28, 2007

Progress Report

We went to the pediatrician this morning and learned that Ella is continuing to grow.

We don’t know how long she is now, but she has gained a pound in a month, so she is officially 11 lbs 4 oz. She also got 2 more vaccines. Sad times! Of course she cried, but once they were over she got her bottle and was fine. She fell asleep on the way home.

Thursday, September 27, 2007

Mr. Mom

It’s funny how things happen in life. The other night I came home from “a long day at the office” and walked in to find Joe sitting in the rocker feeding Ella. This is the typical image at the end of the day, so at first I didn’t think much of it. As I went into the kitchen to put away the stuff from my lunch, I turned and looked at Joe feeding Ella and burst into laughter. What a role reversal! Joe and I are pretty traditional…ok, so we’re VERY traditional. So the idea that we are living this non-traditional life is pretty funny to me. I never thought that my husband would be the one home with the kids while I went out and earned a living. It’s working out well and I am so proud of how well Joe has made the transition. He does a great job with Ella, besides the fact that when I come home Ella is wearing either a) her pajamas that I put her in the night before, or b) her Mets outfit (thanks Darla). If I were at home she’d have a cute outfit on every day! It’s no secret that I’d love to be home with her, playing, rocking, and kissing her chubby cheeks. But, Joe always says that we have to deal with where we are, not where we want to be. So for now, he will stay home with Ella while I work. When he graduates from law school all of that will change! Stay tuned.

Last night Ella and I were playing and she was doing her tummy time. She is getting a very strong neck! So while we’re playing, she starts to roll over. The next thing I know she’s on her back. I, of course, was so excited! Luckily I got the whole thing on video and it’s posted under Ella’s play time videos. There is also a video of her in her Mets outfit playing (under “Ella in her Mets outfit”). Isn’t she so cute!

Monday, September 24, 2007

Normal Everyday life with a Three month old

Another great weekend

My weekends are completely different than they used to be. Before Ella came along, Joe would spend his Saturday s either in the law library, or up in his man’s room reading. I would do the same thing every Saturday…wash the sheets, clean the kitchen, clean the bathroom, vacuum, and always have a load of laundry going. Now I am lucky if I get clean sheets on the bed. The bathroom is a disaster, I wash the dishes before I leave for work in the morning, and I don’t remember the last time I vacuumed (I’m embarrassed to say). This weekend I did get a lot done. I changed the sheets on our bed and Ella’s, I picked up the pile of clothes that had accumulated in our room, and I did several loads of laundry. I feel like we can at least walk around the house without stepping over a bunch of junk.

On Sunday we went out to lunch with a family from Maryland. They have a daughter with EB. It was great talking to them about their daughter and the family’s journey. Kristen is 6 years old and by looking at her you wouldn’t know that she has EB. Both she and her sister (EB free) are beautiful girls! Kristen showed me her hands and elbows where they get scratched up, but for the most part she looked like every other 6 year old. It was so comforting for us. The truth is we just don’t know what to expect. Time will tell how this decides to manifest itself in Ella. But it is comforting seeing a little girl living with EB and it doesn’t slow her down. She said that the main thing she does is stand in the back of the line at school so that other kids don’t step on her heels when she walks.

On another note, I’m having trouble figuring out how to calculate baby age. It all goes back to being pregnant. When people refer to pregnancy they always say that you’re pregnant for 9 months. Well, when you get pregnant you learn that its not really 9 months, its 40 weeks. But if there are 4 weeks in a month then you’re really pregnant for 10 months. So Ella was born on June 21, which makes her 13 weeks old. Going with the 4 weeks in one month theory, then she’d be 3 months and 1 week. But the 21st of September was last Friday, so that would really make her 3 months old right? So do I tell people she’s 3 months and 1 week, or just 3 months? I’m confused.

Ella officially outgrew her bassinet. It’s packed up and ready to be put back in the attic. Now she sleeps in her Pack N Plat at the end of our bed. I’m just not ready for her to sleep in her own room yet. Joe is downloading two new videos right now, so they should be viewale shortly in the "Ella Playtime Videos" soon.

Wednesday, September 19, 2007

Pastor Don Davidson's Words

You Must’ve Been a Beautiful Baby

"One of my favorite duties as a pastor is conducting Parent-Child Dedication services. And, at First Baptist, I get to do it almost every week!

Not to be confused with infant baptism, or “Christening”, this is a meaningful few moments at the altar where parents commit themselves to raising their child in a Christian home. Teaching Jesus’ ways, and modeling before that little one the way to follow Him. The baby won’t remember any of it, and will one day, when older, have to make her own commitment to the LORD. It doesn’t happen automatically, because God honors the free will that He gave us, but it is almost inevitable when those parents honor the vows made in that service. Just a few years later, down the aisle the child comes and into the baptistry – and I get to hold him again.
When I started my ministry over three decades ago, I only had these dedication services once a year (usually Mother’s Day). Parents with their babies would stretch across the front of the sanctuary and all repeat their promises in unison. I would introduce each one, of course, have one all-inclusive prayer and off to the nursery they would go.

But I didn’t enjoy it that much. Too many names to remember and too many opportunities to flub my lines. Plus, once one baby started crying it would be like dominoes falling – soon they’d all be screaming. It unnerved me.

About twenty years ago I saw James Flamming at First Baptist, Richmond (now a good friend), conducting a Parent-Child Dedication service as part of their televised worship service. He did them one at a time, and it was so tender and personal. And he spoke words over the baby – words of prophecy and hope. I sat there wondering why it had never occurred to me to do it that way.

During that same time in my life I happened to be attending a Sunday service (while on vacation) at Peachtree Presbyterian Church of Atlanta. Their great pastor, Frank Harrington, (now in Heaven) was having an infant baptismal service and he took the little child in his arms, held her up to God, and prayed before touching her head with drops of water.

I didn’t believe in that, theologically– but I wept the entire time he was doing it, so moved by all the faith and hope, plans and dreams there on display. I started doing it just like that (but without the water, of course), and have never gone back to the old “line up” approach.
So I get to hold the baby, speak scripture into little ears, and present him to his new family of faith at First Baptist Church. These children are animated, usually bright-eyed, and they almost never cry while I’m holding them. I think each baby is the most beautiful baby I have ever seen.

Yesterday was no exception – but what an exceptional moment it was! Joe and Katie Murray brought forward their little girl, Joella, to be presented to God. She’s the baby born this summer with a very rare skin disorder that made us fear we’d not get to keep her very long. And so we all prayed, Deacons ministered in every way imaginable and Bible Fellowship friends brought meals every night to the weary parents and sets of grandparents.

They see her as a special gift from God (as we all do now) and on Sunday they were powerfully and publicly giving her back to Him, for whatever His will might be in the future. It is possible to trust our good and loving heavenly Father – even with that which is most precious to us. You learn that, over time and through dark valleys.

Baby Joella and I were at a cook-out together on Saturday night, so we did a little “bonding” and practicing for the big event. We were both pretty confident about it on Sunday morning. And the service went off beautifully.

Later, during the choir music and Robin Huffman’s solo, Joella did break down and let out a wail or two. There are times when that is rather distracting to me and takes away from my worship experience – but not yesterday. A big smile came across my face as I realized how wonderful babies and life really are. Their arrival on the scene means that God has not yet given up on His world. That there is still some great thing to be done – and maybe this one will do it.

I almost leaned over (I was sitting beside the family) and volunteered to hold her again if that would help. But… it was time to preach.

And I’ve only got 2 hands."

Sunday, September 16, 2007

Ella's Special Day!

Well, today was Ella’s baby dedication at church (see a link to the pictures on the right-hand side), and despite some concern from Mom and Dad about how she would do up on the big, it all went well. She wore her beautiful satin pink dress that Gi Gi specially made for the occasion. I was paranoid that she was going to spit up all over it, so she had a bib on and was covered with a blanket until we got to church. She had her white Mary Jane socks on and her white bloomers with her initials (thanks to Judy and Jennifer). I might be biased but she looked absolutely adorable!

She got a good nap in before we got to church, so we were hopeful that would keep her in a pretty good mood. It didn’t work out as such. As soon as we arrived, our biggest fear of her screaming the entire time on stage looked certain to occur as the noise from all the people startled her into crying. She cried up until about 1 minute before we were supposed to go up on stage, then all of a sudden she stopped (God heard our prayers). She was perfect for the entire dedication. She just looked around and at one point even gave a big yawn. She let Pastor Don hold her without a fight and all through his prayer over our precious baby she was perfectly silent. Pastor Don handed her back over to Joe and we walked down to our seats. She gave us about 1 more minute of silence then the cries began once again. At that point we weren’t as worried. The main part was over and she did a wonderful job. Way to go Ella Bella!

Pastor Don does great at baby dedications, so we knew he would do great with ours too. At one point he asked us if having Ella has challenged our faith, to which we replied, “Oh yes!” During the dedication Joe and I committed to raising Ella in a home where she would learn the love of Christ and that we would teach her to walk in the ways of the Lord. He told Ella her life verse (John 10:10) and prayed over her.

Uncle Curby and Aunt Gina (and Ella’s 2 cousins-to-be) drove up from Charlottesville, VA to participate in the event. After church we went to Red Lobster for lunch. Joe and I did the switch-off routine where I would eat and he held Ella, then he would eat while I held her. It’s hard going out to eat because you don’t have all the baby gear that makes eating possible, like the swing, bouncy seat, etc. We made it through and when we got home we changed Ella’s clothes and she settled in for a long nap.

It was a great day! God is so good. He continues to bless our lives with precious Ella. God has used her little life so much in her 12 short weeks; I can’t wait to see what he has in store for the rest of her life.


Friday, September 14, 2007

Raindrops on Roses and Whiskers on Kittens

Ella has never seen a rose or a kitten, but her 2 favorite things are: 1) sitting in her swing and 2) looking at herself in the mirror. In the swing she watches TV, waves her arms and talks to us. When she looks at herself in the mirror she smiles and talks to that cute baby looking back at her. I’ve tried a million times to get a picture of her looking at herself and smiling, but I always catch the tail end of the smile.

Ella has officially made the transition from 0-3 month clothes to 3-6 month clothes. She is getting to be such a big girl! Of course I had to go to Babies R Us and Target to make sure she has plenty of things to wear for the next 3 months. I made a big effort to get things other than pink, or clothes that have pink but also have another color. It’s hard! When you love pink as much as I do, having a little girl to dress in pink is a dream come true! I’ve already explained to Ella that pink is going to be her favorite color, but I still feel like I should at least give her the chance to see other colors. Unfortunately life consists of more colors than just “blush and bashful.” Now if I can just teach Joe to put her clothes on the right way. He tends to get confused and when I come home Ella's clothes are on backward.

Ella is also outgrowing her bassinet. During the night sometimes we will hear a thud when Ella is stretching out her arms and hits the side of the bassinet. And she often will wriggle herself all the way up to the top so that she can’t move her head. The problem is that I’m not ready to move her into her own room yet! I want her right next to me during the night. (I still check her all the time to make sure she’s breathing) We are discussing plan B, and right now I think we are going to move the pack n play into our bedroom.

We had a great weekend with the New Family Advocate from Debra, who visited us this past weekend. She was very helpful in answering our questions about how to handle Ella’s EB, especially once she starts to crawl, how to give her a bath, tips on improving our wrapping skills, and much more. We really appreciated her taking the time to come visit us.

On Sunday we went out to lunch with a family from church, the Moutray’s. They have a little girl named Charlotte who is 2 years old. The funniest thing was Charlotte would stand on a chair right next to Ella’s car seat and get an inch from Ella face to look at her. It was so cute! I don’t think Ella knew what was going on. She would look at Charlotte then look at me, then look back at Charlotte . Kids are funny.

It’s my 3rd week back at work and Joe’s 4th week back in school. We are getting into a routine. I go to work all day and come home, only to watch him walk right out the door to class. Finally at 10pm we are able to hang out and have family time. We just keep reminding ourselves that this is temporary and in a few short years he will be out of school and our lives will be semi-normal.

It's bedtime, but Ella just woke up from a long 3 1/2 hour nap, so I don't think she's going back to sleep anytime soon. Since I have to go to work tomorrow, Daddy gets to stay up and keep her occupied.


Friday, September 7, 2007

Sweet Melodies

Jenni Soto Benson, our great friend and Katie's maid of honor, is a professional singer. Any of you who have heard her perform can testify that she can sing with the best of them. She recorded a new music CD entitled, "Now I Lay Me Down to Sleep," that includes beautiful lullabies and melodies.

Her desire is to bless families with her talented voice while also helping support Ella's medical costs not covered by our insurance and one of the best Epidermolysis Bullosa research organizations called the Debra Organization,

Debra has been instrumental in helping Katie and I learn about how best to care for Ella. Shortly after her birth, they recommended EB doctors, provided special medical supplies for her blisters, and showered us with encouragement. In fact, they are sending us a visitor this weekend from Kentucky to help us learn strategies for raising an EB child.

We have attached an order form on the right-hand side called, "Now I Lay Me Down to Sleep Order Form" for those interested in picking up a CD or two. If you have questions about the CD, please email Jenni at We thank you in advance for helping to defray Ella's medical costs that our insurance will not cover and a fantastic organization that is doing great work for families all over the United States.


Wednesday, September 5, 2007

September 16, 2007

This will be a very special day for Ella as it is the day she will formally be dedicated to God at our church, First Baptist Church of Alexandria here in Alexandria, VA. A baby dedication is a ceremony where parents formally and publically declare their dedication to raise their child in the way of the Lord Jesus Christ and profess that their child is a gift from above. We already believed from the day we learned Katie was expecting that Ella had been given to us as a gift from above and publically recognizing such will be a great event.

You all are invited to attend the ceremony if you are in town. It will be a lot of fun to see our Pastor Don introduce her to the entire congregation on the podium right where Katie and I professed our wedding vows (I bet her Momma will have her dressed all cute too!). It is scheduled for 9:30AM at First Baptist Church of Alexandria, 2932 King Street, Alexandria, VA.

Friday, August 31, 2007

Ella's Stats

We always knew Ella was perfect, but it was nice to have the Dr. confirm it! We went for her 2 month well-baby check up today at the pediatrician's office, and here are Ella’s stats:

Height: 22 ½ inches (up from 21 1/2 inches on her 7/27/07 appointment)
Weight: 10 pounds 4 ounces (up from 7lbs 8 ounces on her 7/27/07 appointment)
Head Circumference: 15 1/8 inches (we forget what this was on her last appointment)

These states rank her in the 50th Percentile, which means that she’s exactly where she needs to be. The Dr. also said that Ella is doing a great job holding her head up and that most 4 month olds that don’t have as much control as Ella! See, I told you she was a perfect baby! The down side of the visit was that she got the first 2 of her long series of scheduled shots. Of course she screamed, but it only lasted long enough for us to get the bottle in her mouth. I think that considering all she’s gone through the shots weren’t that bad. Once she ate a little bit she quit crying and fell asleep.

This also marks the completion of my first week back at work. Next week will be the true test when everyone is back in town and Congress reconvenes. All in all, I made it through pretty well. It was exhausting and a couple of nights Joe covered all of Ella’s feedings so that I could get some additional rest. But I made it through and now I’m looking forward to a relaxing Friday night at home with the fam. During the day I call home several times just to make sure she’s ok, and of course I get worried when I call and hear her crying in the background. Joe is doing a great job at home with her.

On an unrelated note, today Joe and I found out that there is going to be a new Chipotle in the shopping center near our house. We were almost as excited about this as we were Ella’s Dr. visit! It was a great day!

Monday, August 27, 2007

Back to the old grind

Days back at work: 1
Tears shed: none, suprisingly
Phone calls home: 5
Emails home: 6
Times pictures were looked at: 20
Thoughts about Ella's sweet face: Countless

Sunday, August 26, 2007

Trip to NJ

This weekend marked another first. Ella’s first trip to the Garden State! We made our way up to NJ to visit Joe’s family and attend his sister, Katie’s baby shower. She and her husband Jarrod are having their first baby in October and we are excited for this new addition to the family. This will be the 3rd Murray born since May. Ella got to meet most of her Aunts and Uncles and cousins (we missed you Ellen and look forward to seeing you this fall). I think she was a bit overwhelmed. I tried to prepare her ahead of time by letting her know that there are a lot of Murrays (6 sisters, 1 brother, 5 brother-in-laws, 1 sister-in-law and 8 cousins), and that sometimes they get a little loud, but they are all wonderful people who just want to love her. Ella especially enjoyed meeting her cousin Edie who was born just 6 weeks before her. While close in age, they are not close in size since Edie weighs in at a whopping 17 pounds! Ella did well most of the time, but sometimes in the middle of a party she would have a melt down and just need some quiet time. Overall it was a great trip and I am so glad that they all got to meet Ella. She slept most of the ride up and all of the ride back, which was a total blessing!

It was also nice to meet so many people who have been praying for Ella. She has a large support system and we appreciate all of the continued prayers. Also, thanks to the Leppard’s for letting us crash at their place.

Grammy Janet, Joe’s mom, arrived Wednesday evening and I immediately put her to work. We got home and I said, “Would you mind cooking dinner?” For anyone that knows Janet, you know that this was not a problem (she loves to cook). From that moment on I officially turned over my kitchen! Now she is at the grocery store stocking up on dinner items. Joe will be at class at night, but I will reap the benefits of many hot, tasty dinners for the next few weeks.

This morning at church Joe’s softball team was presented with the championship trophy. Last year they were undefeated until the last game and had the championship ripped from their clutches, but this year they pulled through and came out on top! Way to go FBCA #2.

Ella is growing right before our very eyes! Joe and I have done our less than scientific methods of monitoring her weight and height, and according to our scale she weighs approximately 9 ½ pounds, and my sewing tape measure has her at almost 24 inches long. She has almost reached the end of her 0-3 month clothes and we are now ready to move on to the next size. I guess that means I need to go shopping, which really breaks my heart! :)

Tomorrow marks my first day back at work. While it is very bittersweet, I am comforted knowing that Ella will be home with her Daddy during the day. We decided that it is best for Ella if Joe stayed home with her during the day. While a bit sceptical in the beginning, he is now looking forward to being home with Joella.


Tuesday, August 21, 2007

A Weekend of Firsts

This past weekend was definitely a weekend of “firsts” for Ella. Besides going to the Nats-Mets game (where Joey’s Mets won) on Friday night, we went to Ella’s first baby shower (at least her first outside of the womb) on Saturday. Our friends Casey and Christy are having a little girl so we got to attend the shower for Christy. Ella did pretty good most of the day. She slept the entire drive there and the drive back, which was wonderful for me since it was about an hour away. And she slept for most of the gift opening and games. I was glad that she conducted herself so well.

Another first was our first Girls Night!!! Joe went to see the Mets v. Nats game (yes, two nights in a row) so Ella and I had a quiet night at home –just the girls. We watched a girly movie and ate pizza without guilt, and most of the time just laid on the floor and played.

The best first for the weekend was going to church! We missed being there and were excited to show everyone how much their prayers have paid off! Ella did great during the music and even cooed along with the solo. Then as the preaching began she got a bit fussy (no offense Pastor Don). I think she just wanted to get out of that car seat and see what was happening around her. Once she was up and able to look around she had a great time. I think she liked all of the attention for people coming up to her and saying hello. It was great showing her off and being able to share with everyone how God has shown his grace and mercy through this sweet baby.

Another very important first was going to lunch at Fuddruckers! Pretty much everyone from church goes to Fuddruckers for lunch, so it was important to get her broken in soon on the tradition. Unfortunately this was the end of Ella entertaining everyone and she got pretty cranky. Pat Brewton helped out a lot, and I was able to inhale my hamburger, but we ended up coming home and putting Ella to bed. Still, I think she enjoyed the outing.

Yesterday marked a first for Joe…it was his first day of 2nd Year Law school! Yes, classes began again, so he is back to the old grind. Now I have to get used to him not coming home until 10pm every night. By the end of last year I had forgotten how nice it was to have him home at night, but now I’ve gotten used to it and I’m not excited to make the adjustment back. I am so thankful that he took the summer off from class and spent the time with Joella and me.

Uncle Curby and Aunt Gina came over yesterday. They were on their way home from a long vacation to Texas and Wyoming. It was great visiting with them and Ella loved getting to know her Aunt and Uncle better.

This weekend did mark one very sad last. This is my last week home before I go back to work full-time (cue the tears). I love my job and there is a part of me that is really glad to get back to work, but I will miss being home with Ella and seeing her beautiful face whenever I want to. Luckily Joe will be home with her, so I know that she will be well taken care of. And Grammy Janet is coming into town to help us adjust to normal life with me at work and Joe in school. I know everything is going exactly the way God wants it too, and that makes going back to work easier. He has blessed me with a great job with great people.

Ella is quietly sleeping on the floor next to me, so I had better get some things done around the house. You know how it is with a baby around, everything else gets put on the back burner.


Saturday, August 18, 2007

And the Winner is...

Well, as you can see the winning outfit was the pink National's outfit, however, the winner of the game was the Mets, 6-2. Joe decided that the Nationals outfit was the way to go for a few reasons: 1) The last time she wore the Mets outfit everyone thought she was a boy, 2) The Nationals are the home team, and 3) It's pink. Of course she looked super cute. I think the game was a bit overwhelming for her. Joe and I thought of everything for her attending the game except one major detail...things can get really LOUD! During the second inning Easley hit a home run and the crowd went wild. This sent Ella into tears. Joe and I did what we always do...we stuck a bottle in her mouth. She handled the rest of the game really well and finished the bottle off. One of our friends from church works for the Nationals and he took us up to the adminstrative offices so I could use the bathroom up there to change Ella's diaper. The last thing I wanted to do was change her in one of the ballpark bathrooms. Thanks Aaron! Ella and I left after the 4th inning while Joe stayed to watch the rest of the game. All in all it was a fun night and I'm glad she had her first baseball experience. She is going to have to get used to the games because we love to go to them. We put a couple of pictures from the game in the "Pictures" folder. Check them out.

There is also a new picture of Ella in her green outfit, but the important thing to note is her adorable new socks. I just had to get them for her!

Thursday, August 16, 2007

Still in the Learning Curve

Today started off with Ella waking up at 7:00 am to eat, right on schedule. Unfortunately, as Joe was trying to feed her she kept wincing and screaming. Joe looked in her mouth and saw the biggest blood blister right on the tip of her tongue. Poor Ella was hungry, but she was in too much pain to eat. We tried everything from using a medicine dropper to using a little cup to just squirting the milk in her mouth. We used this special oral rinse that is supposed to numb her mouth, and we just held her and rocked. After 3 hours we knew 2 things: 1) Our beautiful daughter was in a lot of pain, and 2) there was nothing we could do about it! That is the most helpless feeling I think either of us have ever had. We pondered all of our options and decided that we needed to pop the blister. Luckily we have all of this medical gear around, so we put a needle on the end of a syringe. Eventually Ella got so tuckered out from crying that she eventually drifted into sleep. During that time we gently pried her mouth open and I punctured the blister. I know what is going through your head, and that was exactly what was going through mine (even now I wonder what we were thinking). All we know is that it worked and the blister drained. She woke up and tried to eat again, but she was still in pain. We squirted enough milk in her mouth that her tummy at least got satisfied and she fell asleep once again. During her hour nap we prayed that God would heal her tongue enough for her to at least be able to eat. She woke up and now was the test…we put the bottle in her mouth and PTL (Praise the Lord) she was able to eat! She ate very cautiously, almost as though she knew that if she was too harsh there would be a lot of pain, but she ate and that is what matters. It was a rough morning, but thankfully that is over. This did cause Joe and me to wonder how things will be when I go back to work and he’s at home alone. Most of the time it takes 2 of us just to get things done.

Gi Gi went back to Wyoming yesterday morning. We miss her already! Luckily Grammy Janet comes into town next week. We are so lucky to have Grandparents that are able and willing to come help.

Friday night is a very important “first” for Ella. She will be attending her first baseball game…Mets vs. Nationals. The big dilemma we have is if she will wear her Mets outfit or her Nationals outfit. I want the Nationals outfit because its pink, but I have a feeling Joe will win and she will wear the Mets. My personal dilemma is that I LOVE the nachos with jalapeƱo’s on them, but I’m afraid the peppers will give Ella indigestion. I guess I can make this sacrifice for my precious daughter.

Before I sign off, let me quickly remind all of you that today is the Anniversary of Elvis’ death. 30 years ago the King went on to a better place. In honor of Him I am playing my Elvis CD’s for Ella, just hoping some of it will sink in. Luckily she has an Elvis diaper bag to remind her of this great (and cute) man. You Ain’t Nothin’ but a Hound Dog!

Monday, August 13, 2007

Saturday, August 11, 2007

Weekend Update

Well, our precious baby is getting bigger and bigger right before our very eyes! She has fully developed 2 chins, and we believe that she is working on a third. She’s starting to smile at us, although sometimes she just gives us a blank stare, as if to say, “I don’t know what you want me to do.” Either smile or blank stare, her big blue eyes are so beautiful! The question now is, will they become Alexander blue or Murray blue?

We had an appointment with her Pediatric Dermatologist on Thursday and he was very impressed with the skin growth on her feet. He just kept looking at her foot and saying how she had full skin on the bottom. Joe and I knew her feet looked good, but it was nice to hear the affirmation from the Dr. The truth is that the bottom of her feet look almost normal! The top of her feet still have some work, and her left shin and knee still have some work to do, but all of it has progressed really well, and the fact that the bottom of her feet and her right knee are almost normal brings us a lot of promise that the rest of her legs will follow suit.

On another note, thank heaven for Gi Gi. My mom, Gale, has been in town for a week helping around the house and with Ella, and Joe and I are so appreciative! The other day Ella got this great idea to wake up at 4 am and just stay awake. Gi Gi arrived at 8 am and took over while Joe and I napped. This morning Ella was being very cooperative and slept in until 10 am, so while the 3 of us were up stairs sleeping, Gi Gi just watched TV, read and ate breakfast…I think she even washed the dishes. Joe especially likes that she makes the coffee in the morning. We have come to know first had the value of a loving family support system.

Friday afternoon we went to my office to show Ella off. Since its August recess a lot of people were gone, but we still had fun. She slept most of the time, but a few very special people caught a glimpse of her blue eyes. We told Ella that she had to go pick out her future office space. We just don’t know if she’ll be a Senator from Wyoming, New Jersey, Virginia or some other state. The next stop is to show her the White House where she’ll live someday.

This morning Gi Gi was reading the paper while she was holding Ella, and Ella was completely entranced by the big black headlines on the white paper. She just kept staring at the paper like she was reading right along with Gi Gi. Later today Aunt Katie and Uncle Jarrod are coming down to meet Her. They are having Ella’s cousin in October and she is very excited. She only has 3 months to be the youngest in the family, so we have to capitalize on that.

Thursday, August 9, 2007

Ella's Room

Check out Ella's room by viewing the video on the right-hand side.

Sunday, August 5, 2007

Life with Ella Bella

It has been a while since we have posted. We are now officially living with an infant, and life as we know it has changed forever! We love having our little girl home! She wakes us up in the middle of the night, which for some of you might seem like an inconvenience, but considering the alternative we are happy to get up and feed her.

Sleeping through the night has gotten easier as the days have passed. She usually wakes up every 3 to 4 hours. Joe and I have come up with a system where I take the early shift and he takes the late shift. Ella sleeps in a white bassinet with pink ribbon. She periodically grunts throughout the night, and I wake up an average of 15 times a night just to make sure she’s breathing. At first the bassinet was at the end of the bed so Joe and I would have to get up and walk over to make sure she was ok. We moved the bassinet to my side of the bed and it is rolled up right next to the bed so that all I have to do is reach my arm over and feel her tummy move up and down.

During the day we usually have one or 2 fits of crying that end up with Joe and I looking at each other with complete bewilderment. Neither of us knows how to fix the problem! We are getting better. We have learned that Ella likes to be propped up on our shoulder where she can look around and see what’s happening in the world. We have learned that she is the queen of 15-30 minute cat naps and just about the time you think she’s gone to sleep for hours, she wakes up ready to play. And the most important thing we have learned is that Ella LOVES to eat! A bottle will fix almost anything. I, as the mother and the provider of her food, had to learn the hard way that whatever I eat, Ella also eats. So when I loved that cranberry walnut tart and proceeded to eat most of it, Ella’s poor body didn’t respond to the dried cranberry’s very well and she had some pretty severe gas. Mom felt guilty for that one!

Our house has officially had a baby explosion. No one tells you that when you have a kid your house suddenly gets hit by a tornado! Luckily reinforcements arrived just in time (GiGi got here yesterday) so the kitchen is getting a much needed cleaning. She even washed our sheets, thankfully. Until last night we were sleeping on sheets that had been peed on, puked on and had milk spilled on them. It’s just coincidence that all of that was on Joe’s side of the bed :).

Now we’re trying to figure out what kind of schedule to get her on, when to start and exactly how to go about it. We’re new at this parenting thing, so I will be soliciting a lot of advice from all you parents out there.

On Thursday we went for a follow up visit with the Physical Therapist (PT), Occupational Therapist (OT) and wound specialist. They all are pleased with Ella’s progress in every way. The PT and OT said that she is developing just as a 6 week old should. We need to do some specific exercises with her toes, but other than that she’s all baby! The wound specialist said that her legs look good and are healing nicely. She still gets new blisters almost every day, that’s just how it is with EB, but Joe and I know how to take care of them to get them healed.

Wednesday, August 1, 2007

A Popular Young Lady

Below, see the words of Congressman Joe Wilson (SC-02) on the floor of the United States House of Representatives:

Monday, July 23, 2007
Mr. WILSON of South Carolina. Madam
Speaker, today, I am happy to congratulate
Joseph and Kathryn Murray of Alexandria, Virginia,
on the birth of their beautiful baby girl.
Joella ‘‘Ella’’ Gale Murray was born on Thursday,
June 21, 2007, at 1:03 pm weighing 7
pounds 4 ounces and measuring 19 inches
long. Ella has been born into a loving home,
where she will be raised by parents who are
devoted to her well-being and bright future.
Her birth is a blessing.

Saturday, July 28, 2007

The first few days at home

Sorry for taking so long to post the details of Ella’s discharge from the hospital. I know a lot of you have been anxiously awaiting the details. As you can imagine, the first few days home with a new baby (even one that is 5 weeks old) is quite an adjustment.

Most of you probably know that I went back to work for the last couple of weeks. My employer allowed me to go back to work for a few weeks until we knew when Ella would get to come home. This let me save more of my FMLA time to be with her. So I went back to work for 2 weeks, which meant that I missed out on the dressing changes and rounds that the Dr.’s made each morning. Joe did a great job of keeping me informed of all that was discussed. We knew she was getting close to being discharged, but we didn’t know exactly when it would happen, so when Joe emailed me on Monday morning and told me to pack my bags, I almost couldn’t believe it was true.

On Tuesday night Joe and I spent the night at the hospital. Before a baby is discharged they have the parents come and stay the night in a family bedroom that they have so that they can simulate what it will be like once the baby is home. There is minimal nursing care (other than a few stop in’s to check the baby’s vitals) and the parents are pretty much on their own. Ella did great that night. She woke up pretty much every 2 hours like clock work. Joe and I actually did pretty good through the night. It was about what we expected.

Wednesday seemed like the longest day we’ve had so far! There were so many things we needed to do before Ella could come home. We listened in on rounds and did her dressing changes as usual. The biggest hang up for our discharge was getting the broviac removed. There are a lot of kids needing surgery throughout the day, so the surgeons were busy taking care of them. The earliest time someone could come take the broviac out was about 3:00 pm. Joe and I also had to go get the car seat tested to make sure it was installed correctly. Wow, I never knew that so much went into putting a car seat in! The woman who helped us took her job very seriously and covered all the bases with us. Given that she has the lives of hundreds, if not thousands, of kids in her hands, I’m glad that she was so thorough. One thing that I’m sure of is that car seat base isn’t coming out of the car until Ella has outgrown the seat and we’re going back to Children’s to have the next size installed!

Joe and I also had to go pick up her prescription medications because the nurse has to make sure that we know how to administer it properly. We passed with flying colors, thank goodness. By the time we got back to the hospital the surgeon was in the process of removing the broviac. Now we just had to wait an hour to make sure there were no complications, and we could be on our way home. They let us go back into the family bedroom to rest for that hour. Joe slept and I just sat there watching the clock, waiting for 5:00 pm to arrive. The knock came at the door and we were told that after 34 days of waiting we could finally take our little girl home.

For those of you who have never had a baby in NICU, leaving the hospital after delivery without a baby is a very unnatural thing. You go to the hospital with such high expectations of what the ride home will be like, what will you do once you get home, what outfit will the baby wear, who will be the first guest, will Dad drive as crazy as he normally does or will he slow things down for your precious cargo? But you leave empty-handed, so everything is different…things are incomplete. So it was wonderful to finally get to dress her in her “going home” outfit (that her nurse Clarissa bought for her), strap her into the car seat, say goodbye to all the Dr.s and nurses that have become like family, and take that graduation walk. Things were complete…as they should be.

The drive home was wonderful, to say the least. Joe drove very cautiously and I, of course, sat in the back seat so that I could be there in case anything happened. We got home and did what I assume all new parents do…we sat and stared at our sleeping baby. She was beautiful and perfect in every way…perfect because she is exactly the way God wanted her to be and He doesn’t make mistakes.

Ella’s first visitor was Becky, our good friend and neighbor. Her second visitor was Darla, another good friend. I’m confident that she is the cutest baby either of them has ever seen, even though they didn’t use that phrase exactly.

Now, for the info you’ve all been waiting for, the first night! She cried…A LOT!!! She basically cried and ate until about 2 am. I just kept telling myself, this can’t last all night, she has to fall asleep at some point. I also kept reminding myself that unlike other sleepless nights, the next morning we didn’t have to wake up and be at the hospital by 9am. Finally at about 2 am she fell asleep. She woke up about every 3 to 4 hours after that. We all slept in until 10am.

We met with Ella’s pediatric dermatologist at noon. He has dealt with EB babies in the past, which is why we chose him. He looked at her foot, we talked about family history, my pregnancy, and her entry into the world. It was a good visit.

Thursday night was much better than Wednesday. Ella fell asleep around 10 and woke up about every 4 hours to eat. We still slept in. Shortly after we woke up this morning we gave Ella her first bath. She didn’t like it very much. We can only assume that the water hurt her poor feet a bit, but it was something that had to be done. Hopefully it will get easier as time goes on. We went to her first pediatrician appointment this afternoon and Ella is now 7 lbs 8 oz (there was a mistake a few weeks ago, she has never been over 8 pounds, it was a misunderstanding of medical lingo…we had that a lot) and she is 20 inches long. She was sound asleep when we got to the Dr.s office and of course when we had to wake her up she screamed the entire time. Man, that girl has some serious lungs! After her Dr.s visit we went to Joe’s office to show her off. It was his boss’ birthday and we thought that would be a great present. I made the mistake of telling Joe that he could pick out the outfit Ella would wear since it was his office. Of course he picked out her Mets outfit, which resulted in several strangers calling her a boy. I’m not offended, its hard to tell with these babies. When we got home I couldn’t take it anymore so I went upstairs and took a nap. Little did I know that Ella was sleeping right next to me and that my sneaky husband had taken our picture (its posted with the other pictures).

So, there you have it. The first 2 days have been good. The plan for tomorrow is to take Ella for her first walk. Now she is starting to stir and poor Joe is zonked out on the couch, so I had better go prepare the bottle. Thank you all so much for the countless prayers and words of encouragement. Ella is finally home. We are so blessed!


Friday, July 27, 2007

New Pics

Under "Pictures of Ella," the last eleven pics of the group are of her first day at home with Katie and I (our neighbor and great friend Becky Brittain snuck a photo of herself with Ella in as well).

Wednesday, July 25, 2007

Welcome Home!

It's official. Joella is home!!!!!

We brought her home this afternoon. Pictures are forthcoming.

Saturday, July 21, 2007

The best $25 we have ever Spent

We bought Ella a new music toy for her crib, and she loves it! This morning, she would fixate on it and spend a lot of time just checking the sounds and colors out. Check out the two new videos, "Ella and her new Toy," and "One Month Old." Also, there are seven new photo shots of her this morning in the "Pictures of Ella" link.

Friday, July 20, 2007

Fat Baby!

We have several things to praise God for that weren’t mentioned in the post last night. It was late and we were tired, what else can I say.

Ella is a porker (I don’t want to speculate which side of the family she gets that from). She is eating like a pig and is gaining a ton of weight. She weighs over 8 lbs now! Too bad she won’t be able to wear those newborn clothes we have at home. I always feel bad when she’s hungry and the bottle isn’t coming fast enough. She gives me this look that says, “Why aren’t you feeding me? I’m starving and you’re not feeding me yet.” It’s heartbreaking. The problem we have is that Ella isn’t very patient when it comes to her bottle. She wants it when she wants it and is not willing to wait. I don’t have any other kids to compare this to so I don’t know if all babies are that way.

The hospital did Ella’s car seat test the other day. They have to put the baby in their car seat and sit there for a couple of hours to make sure their vitals are stable. Ella passed with flying colors! And we found these little strap covers that will keep the straps from digging into her and causing blisters. Passing this test puts her a step closer to coming home!

She has her hearing test today, which I think will be ok since she responds so well to our singing. The only issue we have now is that she keeps scratching her face. I know that all babies do that, but with her fragile skin it just manifests itself so much worse! We are trying to keep mittens on her, but she’s a mover and a shaker so sometimes they come off. And she uses 2 or 3 pair a day because she is so lubed up from the ointment that she gets them all greasy.

We are so blessed with this sweet baby. Thank you all for your continued thoughts and prayers.


Thursday, July 19, 2007

Interesting News

Two new videos are on the right-hand side (Warning-Naked baby:-)

Joella is on day 9 of 14 of antibiotics to fight off an infection. We are more concerned about this infection than the doctors seem to be, so we ask for prayer for it be gone as soon as possible.

We received good news in the form of her biopsy results. They came back from an EB lab in Buffalo, NY showing she has a rare form of EB for which her blistering and fragile skin could lessen significantly after 1 to 2 years of age. We are sending an additional skin sample to a different lab at Texas Children's Hospital which, hopefully, will confirm the initial results. Although the initial results appear promising, we are cautiously optimistic-only time will tell about the severity of her condition regardless of what words on paper say. However, any good news is still good news we will accept. Thank you for your prayers.

Tuesday, July 17, 2007

Birthday Wishes

Well, I did not get my B-day wish of having Joella come home today, but, nonetheless, it was a good day.

Katie handled her dressing change today solo, as Dad needed a day to get caught up on some much needed rest. Joella ate well today from the bottle. We also learned that she will be on antibiotics for another week. If all goes as well as planned, she could be home in 10 days. We pray this happens.

That's all for today!

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!

Thursday, July 12, 2007

It Ain't Easy Being Born

Grandma Gale Alexander has repeated this phrase many times in the three weeks (today) since Joella was born. We have learned that this is true.

Joella is one of 40 (on-average) babies in the Neonatal Intensive Care Unit (NICU) at Children's National Medical Center in Washington, DC. Most of the other babies in the NICU were born premature or have some respiratory issue which needs considerable attention. Before becoming a parent three weeks ago, I took for granted that babies just arrive as they should nine or so months after he or she is conceived in Mom's womb. We have learned that being born is truly a miracle from God and a process that is not an easy one for many, including Joella. We are thankful that the wonderful medical staff has provided her with tremendous care and attention during her time at the NICU.

A lot has happened since we last posted a few days ago. Here are the highlights:

-We decided against plastic surgery on Joella's feet. The overwhelming consensus from EB specialists and EB parents recommended to give more time for the skin on her feet to heal before opting for a surgical procedure.
-Another surgery on Joella, however, did occur. Yesterday, we consented to have a surgeon install what is called a broviac right above the bottom of her throat, such that an IV tube can feed antibiotics into her main artery. We were scared to do so, but she needed the antibiotics to stave off an infection, and other non-evasive options did not work. Thankfully, the procedure was successful, and Joella is recovering fantastically well. She had to be under anasthesia and the whole nine yards.
-Her temperature has remained stable the last few days and her wounds are continuing to heal.
-We said good-bye temporarily to one of the key members of our Team Joella, Grandma Gale Alexander. It was tough to say good-bye to this passionate, strong, and wonderful helper, but we are sure we will see her back here in Alexandria soon once Joella returns home. For now, she is back home in Wyoming taking care of her cowboy husband Ron.
-The information everyone wants to know is when is Joella going to come home. We desperately want to know this as well. Our gut says that once her antibiotics are done running their course next Monday, the infection is gone, and she is feeding close to 80% of her feedings via bottle, we should have her home by next week. This is not a given, but more a hope.
-We met another EB parent who lives in Atlanta, GA. He provided excellent insight into caring for and supporting an EB child. It was so encourgaging to listen to a positive parent express that he and his wife raise their child with a mindset that their daughter can grow up to be anything her heart desires. Katie and I adhere to this philosophy.
-Katie and I never cease to be amazed by the genuine kindness and care for us as we await the arrival of our daughter to our home. So many have brought us food, and offered to take care of our daily maintenance. It is hard to know what to say other than "Thank You," and that we hope we can be there for you in your time of need.

Our good friend Darla mentioned a song from Natalie Merchant called "Wonder" on a post today. I have always liked the song, but it now has significant meaning in our lives. Below are the lyrics. Check them out:

"Wonder" by Natalie Merchant.

Doctors have come from distant cities
just to see me
stand over my bed
disbelieving what they're seeing

They say I must be one of the wonders of God's own creation
and as far as they can see they can offer no explanation
I believe fate smiled & destiny laughed as she came to my cradle
"know this child will be able"laughed as my body she lifted
"know this child will be gifted with love, with patience and with faith
she'll make her way
"People see me

I'm a challenge to your balance
I'm over your headshow
I confound you and astound you to know I must be one of the wonders of God's own creation
and as far as you can see you can offer me no explanation
I believe fate smiled & destiny laughed as she came to my cradle
"know this child will be able
"laughed as she came to my mother
"know this child will not suffer
"laughed as my body she lifted
"know this child will be gifted with love, with patience and with faith
she'll make her way"