Also, the Doctors feel like that there may be a "bigger picture" to all of this. They are consulting with Neurology and Endocrinology to run more tests and see what else may be going on. As far as treatment, right now they are working to stabilize her heart with medication and continue to run tests for more information.
When I talked to Gina, she said, "I just wanted you to know that I am ok," oddly enough...I believe her. She had a strength in her voice that a determined mother has. She said that of course, they are scared and she is working to not feel hopeless already. I think this has all just come as such a shock. She said that it is hard to not "roll the tape forward" and wonder what the future will be for her, Lilah, Paul and Garrett. She said also, that she is so thankful for Lilah and who she is, and that she knows that God is good. Finally, she said she knows that Lilah is God's child first, but of course this is not what she had in mind for her.
They are able to stay with Lilah in the ICU and are thankful for that. Gina's mom got into town this afternoon and of course Paul's family is there. They are all taking care of Garrett. If you would like to visit, you can call Paul first and see if it's a good time. (If you do not have his number, leave your e-mail address in a comment and I will send it to you.) You will not be able to see Lilah since she is in the ICU, but you can stop by the waiting room and visit with Paul, Gina and the family. They will be honest if they are busy and it is not a good time to visit, but the few visitors that they have had have been encouraging...it's always good to see a friendly face. Gina told me several times that she felt sorry for people, because she knew no one knew what to say and she didn't either. It's not about having the perfect words to say to them, I think just the physical support of seeing people they love will really lift their spirits. I think it will also be very encouraging if you leave them comments on here.
They are going to send updates so I can post and keep everyone updated until they can take it over. I will let you all know of things as soon as I know. Please pray for Lilah and her sweet family.
29 comments:
praying, praying, praying w/o ceasing for God's mercy and continued strength.
My thoughts and prayers belong to you. May God watch over sweet Lilah and your family. Love you all!
Paul and Gina,
There is nothing that eases the heartache of watching your child in pain. It seems to make Calvary more real to us however. We are so sorry this is happening to Lilah.
The Quigleys
We are praying!
Karey, Liz's friend
Paul and Gina,
We are praying for you guys tonight. We will pray that God will continue to give you grace and strength.
The McCurdys
"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you." Isaiah 41.13
We love you.
Frank & Laura
I cannot begin to imagine what your entire family is going through. I have been praying and praying for all of you and tonight at my bible study we prayed for baby Lilah and your entire family and that God will hold that tiny baby in his hands and take care of her. I pray that you have strength and faith during all of this. I will continue praying for your family with hopes that good news will soon arrive.
Natalie & Nelson Pratt (Liz's friends)
Paul and Gina,
Please know that your family is very much on our hearts and in our prayers. We will pray for strength and wisdom for you and the doctors as you proceed with Lilah's treatment. And may you have comfort as you trust God with your sweet little one. We love you, dear friends.
Josh and Michael
I am praying for little Lilah and for your entire family..
Paul & Gina- All we are doing is praying for sweet baby lilah~she is an amazing little girl. I have been praying for much for peace in your hearts and strength that can only come from the Lord. You have so so many praying for you and rallying around you! We are praying for all the doctors and nurses that they would see God's mighty hand in Lilah's sweet life.We love you!
Seth & Aunt Liz
Paul and Gina,
We are praying for little Lilah. Continue to be strong, and have trust and faith in God.
Bubba & Jennifer Daugherity
Paul and Gina-
I am hugging my two kiddos a little tighter tonight and praying for little Lilah.
Go, ye lonely, brokenhearted,
To the Father’s ready arms;
In His tender sanctuary,
Safe from cold and earthly harms.
Yes, His mercy, yes, His mercy,
Rises with the breaking day
We love you dear friends,
Chris Myatt
"Because of the Lord's great love we are not consumed, His compassions never fail. They are new every morning; great is your faithfulness."
Lamentations 3:22-23
Praying for new compassions every morning. Praying for Lilah's little body to rise to the occasion and beat this. Missing you all and hurting with you.
Jordan and I will pray for your family. I pray that all of you, especially Lilah, will come out of this stronger than ever. We love you. ashley and jordan
Paul and Gina,
We are praying for you and your beautiful baby girl.
Love,
Luke and Kelley Doiron
Paul and Gina
Betty and I will add little Lilah to our prayer list along with Brother Bob. The Great Physician will hear our prayers.
Jack H.
Our prayers are with you. Anything you need....we are right next door. It is hope that you feel the comfort of so many prayers and so much love. The Hughes
Paul & Gina,
We mourn with you, but also pray in hope that the resurrected Christ will make "all things new," including Lilah.
The Eby's
We are praying and will continue to pray for Lilah and your family. We are so sorry these are the circumstances.
Ruthie & Eric
Paul and Gina,
We are praying for sweet Lilah. May God continue to watch over and protect her. We love you guys.
Paul & Gina,
We are praying hard for you and your sweet baby girl. We so wish we could be with you during this trying time. With much love,
Simon and Martha
"I have seen the anguish of my people in Egypt, and have heard their cries, I have come down to deliver them." Acts 7:34
Praying for you all..
Ashley B.
praying non stop for you and your family. love you, love you, love you. Send Garrett and Nana to play with us... Marie and chuck
We send our thoughts, prayers, and love to you, baby Lilah, and your family.
Allie and Ryan
Gina (and Paul)-
Praying for miraculous healing, peace that passes understanding, and supernatural endurance during this storm.
With much love from Texas,
Amy (Walters) Myers
"Don't be afraid, for I am with you. Do not be dismayed, for I am your God. I will strengthen you. I will help you. I will uphold you with my victirious right hand." Isaiah 41:10
You all are in my prayers along with Brother Bob.
Courtney McMurray Reed
Gina - My prayers are with you, your family, and precious Lilah. May the power of prayer and the support of your family and friends give you all strength.
We may not be able to completely understand all that you are going through, but I pray for peace during these trials.
There are good doctors at Children's that can advise you, but having gone through something with our daughter, let the holy spirit be your advisor.
Steven Bonnett
Dear Gina and Paul,
There is something the world likes to call "normal". It's often about good health and having carefree fun. Sometimes we expect that to also mean no medicines or cares, nothing "different", no cross, no sickness. The Jesuits say to be in God's will might include for one "not to prefer health to sickness". I find this comforting because it lets me off the hook from wanting some kind of elusive "normal" where everybody likes me and is happily comfortable with me in spite of any known discomfort I might have, so they can ignore my foibles and I can "fit in". But isn't that what most of us wants? To be "normal". That's not the true reality though, because most, if not all of us have crosses to bear. Sometimes what we learn from our crosses we can share with others someday to help them with their crosses. Mother Theresa once said that she understood that God never give us more than we can bear, but she just wished that He didn't trust her so much. Ain't that the truth! Sometimes we get to give our cross back to God and He will take it back for a while, for me between ages 12 and 27-ish.
When my neurologist told me at age 11 that I'd "grown out of Epilepsy", but in my 20's and 30's the subject came up again-during the high stress of my marriage to my ex. The heart doctor found low T3 at the time, but opeted for heart me instead, but not I am on Thyroid and no heat med. Ihave MVP like Mom does. I hit the medical libraries and internet hard to try to understand, finding that Phenobarbitol clears Thyroid out of the blood which my doctor now agrees that it could have contributed to my fast growth since my other hormones had to try to keep up and balance themselves as that happened. Low blood sugar as well as stress, and even low Thyroid can influence an EEG. I then showed three clear video EEGs as an adult and two clear MRIs, but two PET scan showed something in the same area my peit malsshowed on EEGs as a child. A an adult I found out that going off med is more harmful than being on it so then the anger over what happened to me all the time I was off it and was it sugar-related like my pediatrician thought so long ago so then the insulin test i had to fight to get as an adult did show high and that can explain the bad PET due to radiated glucose bein given in a vein half an hour before the pets! Phew!--and then the meds only gave me traffic tickets! A Priest told me that God will sometimes give our cross(es) back to us again after we ask Him to take it because we don't want it/them. These health problems for Lilah are not just her crosses, or yours each and together, but they will be for the whole family and all of your friends who all love you very much so I want you to know I am willing to join in helping you carry this new and confusing burden. I have a lot I can share with you personally about your same experience as far as the seizures are concerned. I do remember as a child that getting "dizzy spells"-as we called them, came with comfort found in my Mother's loving and reassuring arms! That was the best treatment of all! But I hated taking a nap while everyone else was having fun at recess! (pre-K) In grade school on the med I got good grades, As & Bs, and was well behaved, but then once I was taken off the meds no one thought twice to test me for learning disabilities or monitor me. I wasn't even weaned off, so I got terrible insomnia which has stuck with me (or was it always my normal circadian rhythm that the Phenobarb doped me out of?) I was born at 9:20 PM so maybe I thought that was morning and it stuck? Who knows?, then I got mono, then Chicken pox all in the same yrar! Later, as an adult after substitute teaching for a while I got myself tested for learning disabilities. Ta da! That explained the difficulties in college and even high school with math and equations in Chemistry, for example. But my language on the PSAT in 10th grade was 99th%-ile! My IQ never suffered. I cam up to 121 in college and have been tested similar since. So, we must not believe that our long deceased Uncle Bill who Aunt Rose cared for all his life, and hers, represented some dire standard that you will have to look forward to having. Medicine has come a long way since his day! Presuming the worst is not fair. You must remain hopeful and optomistic! Uncle Bill had an additional diagnosis, don't forget that, or let my Mom, who is full of fears, get you going on that! I am not afflicted like he was at all. Issues, maybe yes, but his thing, no. So!...Though I have been remiss in not ever sending cards or gifts to you to welcome and rejoice over your having children, I want you to know that hear about them, see the pictures onn Mom's frig and even in a frame, love you, think of you many times and have been happy for you about your life and love with Paul ever since your marriage. You are blessed!!! You might not feel that way at this place and time, but you are blessed! God is the third person in all marriages Who can strengthen you, but absence is suffering is not the presence of blessing or visa versa. There is such a thing as redemptive suffering and offering up our sufferings for the salvation of souls. Right now Lourdes, France is celebrating it's 150th Jubilee. Many people go there for healing. Tonight I stuck Lilah's birth announcement facing to Pope at Lourdes while he anointed and blessed some who were sick. I prayed for her to be healed. The static of the TV kept the card close. She also has a guardian angel who you can ask for extra help! There is a lot that can be done for Lilah! Most Cchildren's hospitals are great! Detroit has a good one. They didn't have the video EEGs when I was young, but I went once a year all through my childhood to get one regular kind and see the Neurologist, who was Dad's same doctor. I went pale in my crib, so I am told and Nana's best friend Maimee noticed it due to her son having the same symptom. But the Phenobarb was chewable at a young age and there are a lot of other medicines and treatments out there, and a lot of web-sites, too. The word Epilepsy might not even apply to Lilah! I am persuaded, along with a current doctor of mine, that because my MRIs are normal, and so were three 8 hour video EEGs then the PETs were not so good, but showed in the same areas the neurologist called as a child, then maybe because of the radiated glucose going in 1/2 hour before the scan that sugar/insulin really does play a significant role with me. I try to avoid caffeine, organic stimulants like Ginsing, too many carbs, and alcohol. It's different for everyone, though, but I am just sharing to widen your perspective. In the future your problems will be part of your "normal" and that is life for us all. You will get through this. I even knew a boy in my class in middle school who'd had heart surgery as a baby and as teens he had a little scar on his chest that he liked to show evertbody. We all thought it was amazing that his heart was ever that little! He was fine. Lilah, as every one of us does, has a mission on this planet. All babies teach love, no matter their age, from conception they bring us something and what they are here to accomplish in us is our responsibility to receive and grow from and be thankful for, no matter what the circumstances-happy or sad. I only hope Lilah will respond well to her treatments and that you be brave and hold her a lot. They taught us in Child Development/Infancy in college that there is no spoiling in the first year, only loving and reassuring and trust building on the part of the baby by the parents always meeting every need promptly, then after age one the boundaries need to start being set, so for now you just love on her all you possibly can! It won't hurt a thing! Maybe you can ask your doctor about the Ketogenic Diet which has helped many children with seizures overcome them completely or at least control them well. Love you! Hang in there! I am sure you are a good and loving Mother, and Paul a good and loving Father, plus you to love each other so that is the best!
Cousin Cathy
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