During Lilah's surgery, ,which went very well, there was quite a concern on Lilah's irregular heartbeat. This has never happened to her before under anesthesia. We saw a cardiologist in 2009 who ran all the tests and they showed a slight PDA. But never have we heard anything about irregular heartbeats. The Anesthesiologist was very concerned because she said that it wasn't just one line of irregular beats, it was two. She brought us the strip and said Lilah needs to be seen by the specialists in Atlanta for her heart. I asked Dr. Greenberg if we should follow up with her cardiologist in Savannah and he said, "if one of my children had issues with their heart, I would want them to see the specialists here. There are the best almost world wide."
All of this time having Lilah I have said that I would fight and fight for her. I wanted to know everything there was to know about her, so I could help her live a better, more quality filled life. Now, there could be an issue that could affect the QUANTITY of her life. Help me. Please!
Here is the link to Lilah's genetic information. The deletion on her 8th chromosome.
Click Here or see above picture. Please share this link, picture, etc. I need answers.
I NEED to know. I need to know if her condition...whatever it is will affect how long she may survive. I need to know if there is a possibility that my child may not survive past a certain age.
I. Need. To. Know!
I cannot beg for help enough. I am prepared to drive all of the country, take our children, homeschool in the car, whatever until we know. I am so tired of the SLOWvannah answers. Sorry to be brutally honest, but I am. Someone PLEASE help me!
Just the idea of the fact that my girl may not be here long enough to see or do something makes me sick to my stomach. I am dying inside. So many of you think I am so strong, but I am not. Far, far, far from it.
I am crying as I type this. I am powerless over all of this. I cannot control how long my child may live, the quality of her life, the stares she gets, how delayed she is, how HARD this is.
When I lean on the truth in the Bible it says, " Trust in the Lord with all your heart." Proverbs 3:5
Right now I am having such a hard time trusting. God, please give me some answers. Equip me with the means and knowledge to help Lilah. I am so far in the valley of fear right now. I need physical help. Help to find answers, help to fight Medicaid, SSI, therapies, help to continue to do this. I am exhausted emotionally and physically. Is this my "new normal?" Will I forever be this exhausted?
Learning this week that Lilah's AFO braces were not correct for her feet, that I should have had them on her ALL the time, that we have no more visits per insurance for therapy, that she doesn't qualify for more because we make too much, learning that if we quit our jobs that our child would get MORE(ok USA, that is beyond messed up!) I am quite fed up!!
I need prayer. But, Lilah needs it more. I need help finding answers about Lilah. I need help with Medicaid, SSI, Katie Beckett, Easter seals, etc, etc, etc, etc. I am but ONE woman. I. Need. Help. Please!
I don't ask for help often. I suck at it. So, here I am...begging for it. Please help me find answers. Please first and foremost take her genetics information to everyone you know and pass it along. Please someone tell me what it is that she has. Please someone tell me what I need to know about my child. Please someone help me fill out form after form. I need someone who will be willing to watch my kids, the older three, without yelling and screaming and spanking them because they are tired and don't know how to control them like I do. (If you cannot watch my children, please do not offer it) Please someone love me, and us, in the valley. I need you there. I know I can be a lot to handle sometimes. Please. Don't. Walk. Away. From. Me. I need you. I may not say it, because I just don't know how somedays filled with such emotions. My time in Holland, although gorgeous, has been a never ending roller coaster with the largest dips. I cannot do this alone. I am drowning in it doing it by myself. Please help me.
All of this time having Lilah I have said that I would fight and fight for her. I wanted to know everything there was to know about her, so I could help her live a better, more quality filled life. Now, there could be an issue that could affect the QUANTITY of her life. Help me. Please!
Here is the link to Lilah's genetic information. The deletion on her 8th chromosome.
Click Here or see above picture. Please share this link, picture, etc. I need answers.
I NEED to know. I need to know if her condition...whatever it is will affect how long she may survive. I need to know if there is a possibility that my child may not survive past a certain age.
I. Need. To. Know!
I cannot beg for help enough. I am prepared to drive all of the country, take our children, homeschool in the car, whatever until we know. I am so tired of the SLOWvannah answers. Sorry to be brutally honest, but I am. Someone PLEASE help me!
Just the idea of the fact that my girl may not be here long enough to see or do something makes me sick to my stomach. I am dying inside. So many of you think I am so strong, but I am not. Far, far, far from it.
I am crying as I type this. I am powerless over all of this. I cannot control how long my child may live, the quality of her life, the stares she gets, how delayed she is, how HARD this is.
When I lean on the truth in the Bible it says, " Trust in the Lord with all your heart." Proverbs 3:5
Right now I am having such a hard time trusting. God, please give me some answers. Equip me with the means and knowledge to help Lilah. I am so far in the valley of fear right now. I need physical help. Help to find answers, help to fight Medicaid, SSI, therapies, help to continue to do this. I am exhausted emotionally and physically. Is this my "new normal?" Will I forever be this exhausted?
Learning this week that Lilah's AFO braces were not correct for her feet, that I should have had them on her ALL the time, that we have no more visits per insurance for therapy, that she doesn't qualify for more because we make too much, learning that if we quit our jobs that our child would get MORE(ok USA, that is beyond messed up!) I am quite fed up!!
I need prayer. But, Lilah needs it more. I need help finding answers about Lilah. I need help with Medicaid, SSI, Katie Beckett, Easter seals, etc, etc, etc, etc. I am but ONE woman. I. Need. Help. Please!
I don't ask for help often. I suck at it. So, here I am...begging for it. Please help me find answers. Please first and foremost take her genetics information to everyone you know and pass it along. Please someone tell me what it is that she has. Please someone tell me what I need to know about my child. Please someone help me fill out form after form. I need someone who will be willing to watch my kids, the older three, without yelling and screaming and spanking them because they are tired and don't know how to control them like I do. (If you cannot watch my children, please do not offer it) Please someone love me, and us, in the valley. I need you there. I know I can be a lot to handle sometimes. Please. Don't. Walk. Away. From. Me. I need you. I may not say it, because I just don't know how somedays filled with such emotions. My time in Holland, although gorgeous, has been a never ending roller coaster with the largest dips. I cannot do this alone. I am drowning in it doing it by myself. Please help me.
8 comments:
Katie, you are a wonderful mother who loves her children. And for that very reason, you will stop at nothing to get the answers. Yes, medical care here in Savannah is ... I can't think of any words to describe my frustration.
Let's start with each one of us doing one small thing. First of all, next time you have to go to Scottish Rite, spend some time for you and your family at Ronald McDonald House. It's a warm, welcoming family environment. Even if it's just to go for a meal and some peace and quiet, and to share with other wonderful families. When we were there before Kevin's bone graft (Kev has cleft), we joined hands with the group that brought in dinner and prayed. THAT brought me to tears, reminding me that my son's care was in the best possible place, the Lord's hands.
As to cardiologists, I think some of the best in the world (as rated by US News) are at the Cleveland Clinic. Let me see what I can do. . .
And never, ever forget that God chose you to be Lilah's mother.
Sending prayers and hugs your way,
your friend Sharon
p.s. Because of one of the posts to you on FB, I have found a solution to one of my frustrations with medical care in Savannah. I was able to get Kev in to the speech clinic at Armstrong. Not only is the price right, but they are much more in tune with what he needs. Thank you!!!!
Katie, you are never alone. You are in my thoughts and prayers every day. I empathize with the emotional roller coaster and I read and hear your pain and frustration.
The system im Washington sucks as you well know, but the best results come to those who are the squeakiest wheel and biggest pain in the ass. Momma Tiger, take names and kick some bureaucratic butt.
Will contact people in Bham in the medical field, re: 8 chromosome.
Katie,
I don't know if you remember me, but I was a good friend of your sisters' in high school.
It breaks my heart to hear about your daughter. I wish there was something I could do for you both.
I won't tell you how God has a plan for all of us, and that everything happens for a reason. I won't say how He works in mysterious ways, and that you should trust in Him. Not because I don't believe those things, but because I can only imagine how frustrating that must be as a parent to a child in pain. If I were in your situation, people telling me that would make me crazy with grief and anger. It's easy to sit here as a parent with two healthy children and spout off to someone who is truly sufferring about how everything will work out for the best.
What I do want to tell you is to love your daughter with everything you have. Don't waste your energy on anger, or sadness, or doubts. I'm a firm believer in the power of love and the power of positive thoughts. Use all of your energy to love Lilah. Kiss her often. Tell her she's beautiful evry day. Most importantly, tell her she is loved, not only by you, but by all of her family and by many of your friends, even if some of us have never been blessed to meet her. If you do that, no matter how long or short she is with you, you will both maximize the quality of time you have together.
My family and I will pray for Lilah, for you, and for your family. I cannot begin to fathom what you must be going through, but I hope that knowing there are people in the world hurting with you and praying for you can lift a little bit of the burden off of your shoulders.
Yours truly,
Ashley
Katie,
I connected you to a friend of mine, Susan Putman. She is a child development specialist who raised a child with special needs. The doctors told her that Cynthia (her daughter) would never walk or talk and would be a vegetable and would never live to be past the age of 10. Cynthia was over 30 when she passed. She walked and talked and functioned like a 3 year old.
Doctors are not God. The human potential is far beyond what anyone could ever imagine. Just keep being a great mom and take a stand for Lilah.
Also, I suggest you setup a paypal account and add a donate button to your blog. I know I would certainly be happy to contribute to your medical expenses.
Big hugs to you.....
Sabrina Gibson (use to be Feldtman)
Dearest Katie,
Your mission is Lilah. My mission is you.
I can and will help you with all of it. Been there done that, even the eyes and the heart dance after surgery (think of it as a dance and its less scary.) Fear wants you to forget to love, that you are love, that you are loved. That Lilah is perfect as she is. Fear doesn't want you to see the amazing gifts that Lilah has brought you already. Remember she maybe unique, or the first or an anomaly or the beginning of a great cure for other babes. Remember miracles and to laugh.
One poster talked about squeaky wheels and kicking butt. I did that for years because it worked and then decided to walk the walk and squeak like a Christian. To pay attention and smile at the precious human in front of me, to ask after them before asking for my baby, to understand they really wanted to help us and were stuck in the system too. Then we got another member for the prayer team and out of the box help instead of an adversary. You do have to squeak and not give up but squeak with love. Sometimes you just can't smile, a silent tear has awesome power. But fierceness turns away. I will help with helping the form fillers fill in the right thing to get you what she needs and navigating medical options. Please listen to Sabrina Gibson and put that donate box up, she is a living angel. And remember yourself and your sweetheart.
But first, cuddle up with your sweet family and watch "Life is Beautiful" again. Take a look at the kind of hero you are becoming. Then email me, susan@asthetwigisbent,org with a time to call and we'll arrange a weekly talk and on call when stuff like this happens, no charge. See the miracle in front of you and others will follow.
Susan Putman
asthetwigisbent.org/special kids
prodaycare.com
Katie,
Email server having problems, please contact me at parentingpartners@gmail.com
Susan Putman
asthetwigisbent.org
prodaycare.com
Katie, do you have a picture of the strip showing the irregular beats? I work at Erlanger with amazing physicians and in the same building with Children's Hospital here. I'll do everything I can to help you find answers.
Katie,
I found your blog through Stephanie Howell. I wanted to let you know that we live in Atlanta close to Northside Hospital area. I am not sure if you ever have to come and stay the night due to appointments, but I would like to extend an invitation to you to stay here. We have plenty of room. I would hate for you to have to pay for a hotel if we could make your visit to Atlanta easier, please do not hesitate to follow up. You are an inspiration as a mother. Stay close to Christ as He is close to you. He will give you all the strength you need. Katie Kibbe
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