Friday, December 30, 2011
Wednesday, December 28, 2011
Wednesday, December 14, 2011
Friday, December 9, 2011
Monday, December 5, 2011
- so glad there is more information
- dislike the labels
- need labels to get her the services she needs
- I shouldn't feel sad. I should know it is just words that are listed on a study
- this is Lilah. She is low toned. She has corneal opacities. She is delayed intellectually....
Monday, November 28, 2011
Friday, November 25, 2011
He shows you that you not only have courage, strength, love, kindness, abilities, but that you are BEAUTIFUL in HIS eyes.
You may not see HIS blessing right away and you may lay your head and cry. THAT is OK, HE knows what HE has planned for you and HE knows that once you can REALLY see...you will understand why and you will be more thankful to HIM for that storm and valley than you could ever know. You will then look back and wished you would have trusted the entire time and had HIS joy close, but don't worry...HE is not mad or disappointed. No, no, no...quite the contrary. Jesus is crying tears of JOY because YOU finally see. YOU finally feel HIM like HE has always wanted.
HE will do ANYTHING to make us see HIM. And if we are too blinded by our own past, failures, anger, pride, hurt, the LIES we have believed from Satan all of our lives...well, HE will find whatever way HE can to help you understand how deeply HE loves you...like NO one else can.
God is using YOU to help us see what a mess we are without HIM and only HE can fix us.
YOU are here to shine HIS light and help us all see with HIS eyes. Lilah, I love everything about you. I love your heart, your laughter, your eyes, your beauty, your giggles, your FIGHT, your perseverance, your WILL. I am in AWE of you. I don't even have enough words to tell you how deep my love is for you.
Your strength has taught me SO much about myself. I have done things that I never, ever would have done. YOU, Lilah Hope, are the strongest woman I know.
I am so thankful for what Jesus has done in you physically, but I am in tears at what He has used YOU to do with me emotionally. YOU were sent to heal me. I see my worth now. I am trying things that I never would have before you. I watch you fight at therapy and I know I must fight even harder. I am learning so much from you, my sweet girl. Your song couldn't be anymore truer than it is today.
Sunday, November 13, 2011
Monday, November 7, 2011
at this point I heard him say, "Lilah's down there." I began to cry harder. I looked through the sea of people and then I saw her, and Alex, Sammie, and Eli...with my Mom, my friend, Rachel and there was Heather, Lilah's Speech therapist, too.
Here I am with my muse, my inspiration, my HOPE after crossing 26.2 miles for her.
And here we are "Team HOPE" with our inspiration. We did it! 26.2 miles!
(you can see the names on my arm. if you look close. of all of those people I prayed for)
This was written on my leg and many people commented as we ran the last few hard miles. Many people said, "YES! I can do all things though HIM who gives me strength."
I am proof that this verse is true. 18m ago I ran my first 5K in 39minutes, then my first 10K in 61minutes, my first half-marathon in 2:26:00 and then I completed my first full marathon in 4:50:20. ( my goal was not to run for over 5 hours and we made it in under 5...to me, that is huge )
Tuesday, November 1, 2011
This beautiful woman of God made me cry and my heart skip a beat. I immediately said yes and knew God would find a way to get Lilah down the isle.
The little stinker was SO cute at the rehearsal. She was so full of life and love...as always!
Here are a couple of images of Morgan and Lilah on her special day....
Lilah fell in LOVE with Brian, Morgan's life-long friend. Brian melted my heart as he paid such sweet attention to Lilah.
Lilah was so happy that day. She was radiating God's love!
I think she looks like a doll in the next image. ( thank you to my friend, and client, Amanda Byrd, for loaning us this INCREDIBLE dress!)
Can't you just see God's love in her face?!
I told Aaron that I didn't think Lilah would walk if I put her on her walker and walked off, but I did think if he put her on, she would walk forward to me. Here is the only image I got of her walking down the isle.
the congregation clapped. Needless to say, the above image is the ONLY one I have of that moment because my eyes were SO filed with tears that I couldn't see.
Here she is, walking back down the isle to her Mama. I cannot begin to tell you how very proud of her I am. This was one of the GREATEST days of my life. ( Thank you Aaron for capturing this! I will have this image in my mind as I run for her on Saturday)
We had so much fun dancing at their wedding. This image will be repeated one day..I just know it. I know that the Lord has a man planned to LOVE Lilah JUST as she is. Someday Aaron will dance with his daughter on her own special day.
LOVED seeing her dance with her Daddy! Warmed my heart So much. ALL Dads should dance with their daughters!
Even Eli twirled Sammie on the dance floor.
I cannot begin to tell you how PROUD I am of Lilah. She tried to quit. She tried not to walk down that isle, but she didn't give up. She did it...
and as Glenn said just after the ceremony, "We are here to make God famous and she shines HIS light."
Friday, October 28, 2011
Wednesday, October 26, 2011
Friday, October 21, 2011
Sunday, October 16, 2011
Friday, October 14, 2011
Monday, October 3, 2011
Sunday, October 2, 2011
Friday, September 23, 2011
I would definitely ask for a referral from one of Lilah's physicians to see a geneticist at Emory. Lilah's mother's feelings about this situation are completely warranted and normal. Genetics referrals can take time as well because there are not many geneticists in the state of Georgia. I don't know how much Lilah's mom understands about her test results, but basically Lilah is missing a section of chromosome 8 in everyone of her cells. The test is called a chromosome microarray test, and its purpose is to identify extra or missing pieces of chromosome. Chromosomes have two arms called "p" and "q" and the "q" in 8q21.11 tells us that the deleted section is missing from the q arm of chromosome 8. The numbers following the "q" in the description of the missing section of chromosome 8 describe the section's location on chromosome 8, similar to a map. I have personally seen multiple children in the pediatric genetics clinic in Arkansas who have had the chromosome microarray test. Sometimes this test allows geneticists to give a name to a condition and other times all we know is what genetic material is missing. Lilah's case seems to be the later, or in other words there are probably few, if any, individuals with the same exact deletion as Lilah. I did a quick search of the national medical database, and came up with multiple similar case reports but nothing that was exactly the same as her deletion. The geneticist at Emory could help make sure that Lilah gets all the appropriate care she requires, and will continue to follow up with her. Hope this helps.
Thursday, September 22, 2011
We went through a few rain storms, several clouds, some bumps, and the most beautiful rainbows.
Two rainbows! That is a promise from God (remember that verse in the Bible?!)
God sure does paint us some gorgeous pictures, doesn't He?!!
The first test they did was the ECG. (Electrocardiogram) Lilah cried when they placed the electrodes on her chest, but began smiling when they blew bubbles. Her favorite!
We spent almost an hour trying to find the "strips" from Lilah's surgery where the arrhythmia's were present. The nurse practitioner couldn't find the strips, so they decided to go ahead and do the ECHO cardiogram. This is an ultrasound of the heart. They look at each chamber's function and watch how her heart works.
Lilah's PDA(Patent Ductus Arteriosis) has closed. YAY! But, now she has an PFO(Patent Foram Ovale) She has a small hole in the atrial septum of her heart. 15% of us walk arounfd with this and have no idea. We also learned that they believe Lilah has PVCs (premature ventricular contractions) when she is at rest. Basically, when Lilah goes to sleep her heart beats differently than it would when she is awake. But otherwise, a "normal" functioning heart.
This is the theory. To confirm this, Lilah had a 24 hour heart monitor attached to her before we left Atlanta. The results of this will be determined once we send the monitor back, via UPS, tomorrow morning. The Cardiologist, Dr. Sutherland(SWEET man!!) will then go over all of it and let us know what his final outcome is.
Then we had about a 35 minute break. Our friends, Jennifer and Jason Reyes, picked us up and we ate a very quick bite at Chic Fil A before heading to Lilah's post-op appointment. Thank you Jenn and Jason for coming to meet us and spending a very quick trip with us! Miss you guys!
Next we went to Dr. Greenberg's office. He was very pleased with Lilah's positioning of her eye. He wants to see her back in January. I am to continue the patching....5 hours a day.He filled out the forms for her PSI(pre-school intervention) evaluation and we discussed what "legally blind" would be like in a "classroom" setting for her.
I remember when those words would sting me so bad, but you know...time has taught me, along with her other delays and needs, that some sight is better than no sight.
We called for the taxi and headed back to the airport to meet Mr. Baker.
and a little cat nap...
Mr. Baker flying the plane with Aaron next to him
We made it home JUST in time to go to SCC where we praised Jesus for His faithfulness and we helped our church family write scripture on the floors of the new elementary wing before the completion of construction...