Monday, November 30, 2009
Wednesday, November 25, 2009
What a year it has been. Today my emotions are all over the board. Today as I look back at the past year, I am overwhelmed at each moment. The birth, the news, the shock, the grief, the pain, the endless tears, the countless times on my knees in fervent prayer, the anointings, the new friends I have made, the road I have walked, the joy, the happiness, the fight and determination of Lilah, her strength, her courage...HER!
If I had the chance to change it, would I? NO WAY. Not for ALL the money in the world. I wear the pain, the grief, the sadness, and each tear as a badge of honor. Would I change Lilah? No. Would I wish that she was born different? No. Do I wish she could see more, better, etc? In part, yes, but to be honest...I know that God isn't done with her yet. I will not stop believing that He has great plans for her and HE will heal her. He already is. He has given her more than we could have EVER hoped for. She sees my face and smiles. I never thought that would happen, nor did I expect it. I am grateful for everything she is and everything she does. I do not care how long it takes her to crawl, stand, walk, run, jump, climb,etc. She WILL do those things. On her own time. She WILL do MORE than we ever dreamed she would do. She will change the world. She already has. God is guiding her. God is strengthening her. God is, and HAS, changed me so I could help her. So I could help my all of my children.
I am VERY grateful!
Thank you, Lord, for the birth of Delilah Hope Sharp!
Happy First Birthday Lilah!
I Love you with every fiber of my being.
Monday, November 23, 2009
Let me tell you about Lisa...she is....kind, compassionate, UNDERSTANDING, unconditional, TALENTED, a teacher, a wife, a friend, a musician, artist, Gardner, has teachable spirit, builds me up when I am down, and helps people understand kids like ours more. Lisa, I could NOT have made it this past year without you. THANK YOU. THANK YOU! You have allowed me to be something I am not often allowed to be....myself! Thank you for telling me it was OK to think, feel, act, cry, love, weep, wail, laugh, giggle, and more ALL at the same time. I thank GOD for YOU. Being understood is one thing I CRAVE! Thanks for really understanding.
On to authentic me:
1. My closest friends call me Krazy Katie. There isn't much I won't do to get someone to laugh. (Hence my favorite movie quote, "Laughter through tears is my favorite emotion!") I LOVE to laugh!
2. I can get in and out of super Wal-Mart with a cart full of groceries and four kids in tow ...all in under 30 minutes. Speed Demon!
3. I have a necklace on my neck that has my cross AND ring words, "Peace", "Hope", Faith", and "Grace"(My girls middle names. The peace was given by a dear friend and prayer warrior Patti) This necklace is tarnished and is heavy, but I will NOT take it off. Lilah plays and teethes on this necklace several times a day. I wear it for it holds several sentimental values to me!
4. I haven't slept 8 hours in 7 years. I have been pregnant and/or nursing for 8 years. I am officially tired. BUT I would NOT change a single second of the last 8 years.
5. I grow more in love with my husband and children each and everyday.
Lilah's cake and cupcakes! HOPE!
"What part do I dig into first?"
That's right, Lilah, go all out baby!
Saturday, November 21, 2009
This questions was asked, "Can Lilah self-feed?"
She's not perfect(who is?) but yes, she is at the beginning stages of self-feeding.
Did you catch that?
What about the curls?
I am grateful for improvements!
- we don't care how little the improvements may be
- ALL we care about is that she IS improving
As we say in this house..."Go Lilah, Go Lilah, Go Lilah!"
Friday, November 20, 2009
This morning I had a meeting with Lilah's Vision Therapist, Marsha; the parent coordinator for Babies Can't Wait, Dawn; and my Georgia Pines representative, Joey.
Dawn was here for Lilah's 6 month follow-up, to add OT, and to talk about goals for the next six months.
Dawn began by talking about what our goals were six months ago...
- Lilah to reach out and grab a toy for herself
- For Lilah to play with a toy alone
- To smile at me ..to see my face
Lilah....was sitting next to me doing ALL of those things!
I could NOT hold back the tears.
You just don't know where you are, unless you know where you've come from.
YOU have come a LONG way!
YOU melt my heart each time you smile at me.
I thank the LORD for you; my special gift from above!
I love you Lilah...all the way up to the moon...and BACK!
WATCH this smile. She's smiling at me. She sees me. She REALLY can...and for THAT...
I AM GRATEFUL!
Thursday, November 19, 2009
- More Doctors visits
- More therapy
- More driving
- More stress
- More go, go, go
No worries on HOW to get there.
To the family who is giving such a GREAT gift...
YOU are changing my life! YOU are giving me PEACE about the safety of my children in my vehicle. YOU are helping me beyond words. PEACE is something I pray for daily. PEACE is something I have attained in the last two months for I KNOW that the Lord is ALWAYS with me. The ONLY thing I can say, even though it is NOT enough is...
THIS gift. This....is God giving to us through YOU!
GRATEFUL for my brothers and sisters in Christ who selflessly give to others!
Tuesday, November 17, 2009
Today Lilah had her consultation with Savannah Neurology. Dr. Katherine Moretz was wonderful. She checked Lilah over. We discussed Lilah's medical history. She asked me why we were there. I told her that Lilah's PT, Laura, noticed that she would get quiet and "go away." Laura wanted to make sure that Lilah doesn't have any neurological problems that would prevent her from progressing.
Dr. Moretz talked to us about Peters patients.(Lilah has Peters Anomaly in her right eye) She handed us an emedicine study about Peters patients that is 9 pages long. Peters patients can have "developmental delays, congenital heart disease, structural defects of the neurologic system, spinal defects, genitourinary abnormalities, external ear abnormalities, hearing loss, cleft lip and palate, and short stature."
Dr. Moretz has ordered an MRI(Diagnosis: Transient Alteration of Awareness, Lack of coordination, delayed milestones, ophthalmology abnormality), an EEG(to test her brain function), a Cardiologist referral(diagnosis: transient alteration of awareness, lack of coordination, and delayed milestones), and OT-occupational therapy (diagnosis: lack of coordination and delayed milestones.)
I will not lie and say that I was not taken aback by the long list of referrals. Honestly....I came home and cried while Eli and Lilah napped.
On the one hand I am So, utterly grateful to be having all of these tests done to see what is really going on with Lilah.
On the other hand I am so, very sad that she is almost a year, and we are JUST now doing these tests.
I am overwhelmed with emotions right now because of SO many things in my life.
PLEASE NOTE: This blog is MY way of coping, dealing, expressing, getting it out and praying! The POSITIVE comments from those that follow the blog warm my soul so much. (If you don't like the content don't read. Please refrain from leaving mean, negative, nasty, hurtful comments. I will delete them anyway. No matter how many times you type them!) There are times...MORE times than NOT...that I do NOT want to talk about it. I want to blog about it. CRY. WEEP. WAIL. Talking on the phone and in person is sometimes WAY too painful. I am sorry to all of my family who feels that I don't tell you personally. I just can't sometimes. Repeating the story over, and over, and over again is emotionally draining and I am already so drained. I am sorry that you do not understand why I can't or don't call. I am surviving. I don't JUST have Lilah, and her condition, and her therapy. I have 3 other children, a house to run, and a family to keep healthy and happy. Please understand...or at LEAST respect my wishes... to allow me to not call. You are still getting the information. I just can't tell each person every detail. I am spent. Besides...I DO have four kids to take care of and I do not want to ignore them to tell the 45 minute story individually. My first ministry is my family... The family in MY four walls. I LOVE YOU ALL. I am grateful for you all. But...I process and deal with things the best way I know how. The best way I can so I don't shrivel and die. I must fight, I must survive, I must press on. I pray that through this you will understand me more. Thank you!
Monday, November 16, 2009
Thursday, November 12, 2009
For SO LONG Lilah would refuse foods with texture.
She was SO frightened to try puffs, cheerios,etc.
as determined a woman that I am...I did NOT give up!
Take a look and see what she ate for lunch today!
Peaches, Green Beans, Puffs, Carrots, and Sweet peas!
Did you catch Eli's sweet voice?
How about Lilah's hair?!! Her hair has grown SO much that when it is unruly it stands up!
By the way...Lilah had a GREAT visit with Laura, her PT, today. Little Lilah Bird is pulling that hiney up and showing the VERY early signs of crawling.
Neurologist Appointment this coming Monday.
Praying that she doesn't have any neurological issues and that we rule out one more thing!
Wednesday, November 11, 2009
Tuesday, November 10, 2009
I haven't blogged in a while because Lilah has been SICK!
The tubes are letting all this nasty fluid out and it is draining in her lungs.
As you can tell from the videos...she is wheezing so, very much.
I have done breathing treatments on her every 15 minutes for DAYS!
Take a listen...(press pause on the music on your right to hear)but be sure to pay attention to how she is responding to items and more of her environment. She is moving out of sitting more and amazes me daily!
She's still happy.
Yesterday, I took Lilah back tot he ENT and he gave Lilah some more meds.
Her regime now is...
- Pulmicort-breathing treatment
- Albuterol-breathing treatment
- Ciprodex-ear drops
Well....I never finished my nursing degree...guess I know why...I am one at home!
On a side note...the van died...again... but as Aaron and I were pushing the van off the road Lilah smiled at me through the tinted window. Now THAT is GREAT news! More vision...more sight...more miracles!
Like I say ALL the time....who cares about the car...Lilah's getting more sight each day!
I WILL remain ever trusting, hopeful, and JOYFUL for the miracles the Lord is giving!
Saturday, November 7, 2009
Wednesday, November 4, 2009
and she snuggled, giggled, and played in the pre-op room
Then she took a long nap after to get the anesthesia drugs out of her system.
the REAL fun began.
Lilah was in such a GREAT mood that I decided to do a photo shoot for her First Birthday Party Invitations.
She was a TOTAL ham!!!!
This is a preview...and is going on my website!