Thanks, Links, & More Thanks!

The sweet baby hasn't been feeling very well this week. She has another respiratory infection, bless her heart. We are getting pretty good at identifying the symptoms early now, so we got her to the doctor quick and she got some relief that very day. A super big thanks to Auntie Steph, who spent her day off chauffeuring us around town to the doctor and pharmacy. I still can't take Ellis anywhere in the car by myself, and while Greg and Granny Janny often take off work for these doctor visits, Stephanie volunteered to help for this one. THANK YOU!

On this Memorial Day when we remember all those who serve in the military and their families, Ellis wants to send this big hug to Sgt. Uncle Grant in Afghanistan and "Uncle" Neal in Iraq. Grant is Greg's "little" brother, who is not that little anymore. Over the past few years this handsome Marine has been stationed in several different places, directly served the President, and traveled  to more countries than I can even name. We are so proud of him and all his hard work. Because of his service to our country, he has not been able to meet Ellis except through pictures and phone calls. Come home soon and hug this baby!



Ellis will hug her lamb until she can give you hugs in person



I keep meaning to share this link, so today seems like a great time. Auntie Ally keeps a blog of her experiences as an army wife living through their third deployment. Allyson and Neal have given us tremendous support and help through some of our darkest moments with Ellis, even in the midst of their own difficult circumstances. When you have time, please pop over to 400 Wake-Ups and show them some bloggy love. Thanks!

And last but certainly not least, we want to share some happy pictures with you of Ellis's social debut. A few weeks ago, Auntie Carrie got married, and I was her matron of honor. This was a huge occasion and one that we had been planning since we were about 5 years old. Ellis did not attend the ceremony because when we go anywhere it's a traveling carnival of loud equipment and supplies. However, she did make an appearance at the reception, which was festive enough that some extra noise just blended in. It required planning almost equal to a space shuttle launch, but we got her there and it was completely worth it. THANK YOU Carrie & Adam for sharing your special day with us!

Allyson, Carrie, me, Stephanie

Ellis congratulates the bride

Pretty girls! The hat didn't stay on long.

She partied until she couldn't party no more.

 

Mostly Good News

We got the results from Ellis's MRI this morning, and it was mostly good news. Two weeks is a long time to wait for something like that, so I had plenty of time to imagine all the things that could be wrong. Thank you to all our friends and family for the prayers because that is the only way we stay calm and on track.
Ellis's doctor tells us that she does still have some small areas of malformed lymphatic tissue in various places, which we have known from the beginning was likely. None of these pockets of bad tissue is threatening anything immediately, but there is one area that needs to be removed. We are still moving toward Ellis being trach-free, but this has to be taken care of first. It is a relatively minor procedure compared to the other surgeries she has had, but she will be under general anesthesia and will be in the hospital overnight. We don't know yet when this surgery will be scheduled. It's the kind of thing that may work on the first try, or there might be more than one procedure needed to get it all.
Some people might consider needing another surgery (or more than one) bad news considering all that Ellis has already been through. We count it a blessing that these recurrences of her tumor are small and manageable and that they are not a major threat to her airway, lungs, eyes, or any of the other possibilities we have heard from other cases (and I invent in my head). We know she has been blessed with some of the best doctors and nurses in the world and has consistently amazed them and us with her strength and resilience. Please pray for Ellis as we work through these next steps.



Ellis makes cookies for Sgt. Uncle Grant! We hope they are still good by the time they get to Afghanistan.



A Long Distance Thank You

Ellis would like to send special thanks to the K-3rd grade Sunday School class at Blackjack Baptist Church in Franklin, KY! These sweet children made her cards to tell her they were praying for her and that they hope she gets well soon. Ms. Joannie, who teaches the class, was a special friend of Ellis's great grandmother, Mildred (my grandmother, "Muddle"). We really appreciate Ms. Joannie and her class thinking of Ellis and you can tell how excited she was to open the cards.
We are still waiting for Ellis's MRI results and direction from her doctors about what our next steps should be. We appreciate all your prayers and everyone who has checked on us. More news soon I hope!

For a Friend

I have worked hard to keep this blog about Ellis and Ellis alone, filtering out all the other things going on around us all the time. But I know y'all are a praying crowd, so please indulge me for a moment as I stray from the program.
This past weekend we unexpectedly lost a friend and a mentor, Ken Greene, who was a partner at our architecture firm, GBBN, and worked closely with both Greg and me. For years he taught us, day by day, how to be better architects. Ken and the other partners at GBBN have always been supportive of our family and went out of their way to make sure Greg could keep working during our three months in Cincinnati in addition to a thousand other things that made our stay more comfortable. When I told our Lexington colleagues about the complications that were occuring in my pregnancy and the things we were going to be facing after Ellis was born, Ken put his arm around me and assured me that he would pray for us and that he would do whatever he could to help us. He and his wife Alice have been a great encouragement to us through this journey, as their son also spent some time in the NICU after he was born. Ken and Alice, along with many others from GBBN, visited us in the hospital and continued to check on Ellis, and even bring her gifts, after we brought her home. There is no way in these few words to express what he meant to us and to all those he knew for so many years. Please pray for his family and close friends now as they deal with this great loss.
GBBN is keeping this page for memories and tributes, professional and personal.

Ellis is Ten Months Old (last week!)

I am a little late celebrating Ellis's ten month birthday, but only because this has been a very busy week and weekend with her Auntie Carrie getting married! Pictures of that are to come soon.
Ellis had a great week and is getting more mobile every day. She gets excited on sunny days because we often take walks in the afternoon. This week we enjoyed an afternoon in the park with Auntie Ally, who took these cutesie pictures.

Yea!

Ellis's eye doctor said that she can wear her eye patch three hours a day now, instead of six like we have been doing. We are all very happy about that and hopeful that things will continue to improve. Definitely an answered prayer. It will be a few days before we get her MRI results, so I am just trying to be patient and not worry. You would think I would be good at that by now, but not really. More updates as we get information...

Busy Days

Tomorrow Ellis will have her first MRI since before she was born. This will be a bit of a procedure because she will be under anesthesia and will have to have her trach switched out for one that doesn't contain metal. We are praying for good results and an easy time for her. She will also have an eye exam, so we really hope that the patching we are doing every day is helping her. It will be a busy day and a long trip for us, so we appreciate everyone thinking about us and praying for Ellis.
Some pictures from this past weekend:

Ellis in her derby fascinator, anxiously watching the ponies run

Mother's Day flowers from Mama & Daddy