This Saturday we have the EEG. If she has Angelman's then the EEG will show (this is taken from a 2003 Medical Journal): Tomorrow morning (4/6) I will call the geneticist again and hopefully his nurse will have more answers on whether or not our insurance will pay for the Angelman test. If they do pay then we will go to Quest to have her blood drawn ASAP. If they do not pay then I will make more calls to get a price on the test and then we will figure out how to pay for it out of pocket. One way or another we will get the test done. Once we have the blood drawn then the 4-6 week wait clock begins. From there two scenarios will happen A.) The test comes back negative and we talk with the geneticist again and we get her tested for the next thing on the docs list and we will continue with her therapies as normal.... OR B.)It's positive, in which case we do everything we are doing now with the exception of a few things, we will step up the various therapies, we will get her on disability and we will start the process of laying the foundation for her care and well being for the rest of her life. We will start learning sign language and the million other things that she needs us to be one step ahead of her.
The pattern most frequently observed both in children and in adults has prolonged runs of high amplituderhythmic 2–3 Hz activity predominantly over the frontal regions with superimposed interictal epileptiform discharges. High amplituderhythmic 4–6 Hz activity, prominent in the occipital regions, with spikes, which can be facilitated by eye closure, is often seen in children under the age of 12 years.
Also a slightly new development, her shaking isn't getting better, even though we have been trying to keep her blood sugar level, so today I bought a glucose monitor to see what is going on. Please pray for me. the thought of sticking Chloe and blood kinda makes me nauseous. So please pray that I can do it correctly and I don't faint. yes ok, I get kinda light headed around blood. it's a thing. Anyways we are hoping that by monitoring her blood sugar level it will give us more insight into her shaking.
I hope this answers some of the questions and helps with anyone wondering whats up.
7 comments:
I have a lot I want to say to you so this will be dividedinto several comments.
Jessica,
A friend of mine shared your story with me via Facebook and it has truly touched my heart. I do not have a child with AS, nor do I have a child with special needs, but my nephew is a special needs child. To sum his case up, after a car accident while he was in the womb, he is missing key matter in his brain and cannot function well. At the age of 4 his communication skills are limited to "mamma" and "dad" with grunts, screams, tears, and laughs as his main form of expression, his gross and fine motor skills are quite limited, and his social skills are almost absent. (I will say that it is heartwarming that one of the first and few connections he made with any of his family, outside of mom and dad, was with me and my children, his eyes just light up and he smiles SO bug when he sees us, it melts me.)But his doctor said he won't walk without assistance, and through prayers, physical therapy, and family support, in the last two months he's started walking and now he can almost make it around my kitchen island by himself!! To this I say, never take man (or doctors) word over the fact that God, our Great Healer, and Creator, can do anything! I cannot and will not give up my dreams of seeing my nephew play tag with his cousins, or talk to me and tell me what he's learning about. And you shouldn't give up on your dreams of Chole talking to you and telling you that she loves you, or even watching her spin in her pink tutu. It may not be when she's 3 or 4 but, when it does happen, it will be so much more precious and meaningful! I do know it's hard to imagine now, and that you are in a low place, but Chole is here, with you, and in your arms, and THAT is what matters. God placed her here with you and He has a reason for that. We may not know why things are the way they are, nor can we see how things could work out for the best, but God has a plan. He may have a plan to touch SO many hearts through Chole's story, or through her to bring you and your family to a closeness with Him that you may not have reached before. It may be that Chole overcomes this to the point of astounding the medical professionals; she may be the exception, the one that helps other AS children. You never know. I'm not going to pretend I know the answers, but I do know God has made us a promise, Romans 8:28says, "And we know that all things work together for the good to them that love God, to them who are called according to his purpose." The verses before and after (Romans 8:26-39) are more affirmation that God knows your heart and that He will take care of you. There is no challenge to great for our God. "What shall we say to these things? If God be for us, who can be against us?" Romans 8:31. ~Rachel
I know I don't know you or exactly what your heart feels or your pains, but I, in recent months, have been in this same low place, crying all day, not eating, or sleeping, going with the motions of life with little to no joy in sight. After having 2 children, (a girl who is 5 and a boy who is 3) have in the last six months lost two babies in miscarriages. One at 13 weeks and the other at 6 weeks. They were earlier on in pregnancy, but my babies none the less. I am a woman who LOVES to be pregnant; I cherish every moment, and have no complaints. If I could be pregnant and keep my baby closer longer I would...I am a very happy pregnant person. And losing two babies has dropped me lower in my life than I ever have been before. I've questioned God, and asked Him "WHY" and "How does ANY good come from losing a baby, let alone two..." I was put on Xanax and Paxil (which I took myself off of.) And I was even considering literally running away from it all and finding a new life so I didn't have to face my pain, which we know doesn't work. I'm still hurting, I'm still afraid of losing another baby. But I've got to have faith that God has a plan, and that this is all part of it. So, I go day by day, trying to read a little of God's word to remind me that He WILL take care of me and mend my broken heart and I will find joy again. I find little things to do each day that bring me joy or peace. It could be going outside with the kids and pushing them on the swings, or taking them for a walk. I have a friend or loved one watch the kids so I can go for a walk and have quiet time with my husband, or so I can read my Bible and talk to God, or even just soak in a quiet bubble bath. Then I turn some music on and get lost in it while I pick one little room or a little area in a room and clean it up one day then leave the rest for another day. Don't overwhelm yourself with all your burdens in one day...little by little. Enjoy the hugs of your boys, and cherish the time you get to hold Chole in your arms, she won't be that little forever. Enjoy a quiet dinner with your husband. I know life is going to have its hurdles, and there will be storms, but don't focus on those. Life is too short for that, the kids grow too fast for that. Focus on the sunny days, keep God close, and keep dreaming of all the wonderful things you want to do with Chole. I know your situation is a tuff one, and it seems hopeless, but it's not. There are people around you that are praying for you and Chole and the rest of the family, and there are loved ones around to give you support and love. And best of all, God will not let you down. We don't know what His plan is and we can't see how our stories will play out, but you can bet that God does have something wonderful in store for Chole and her family. I do want to give you a few more scripture that bring hope and peace to me when I'm feeling down. Numbers 6:24-26, Jeremiah 29:11-13, Philippians 4:6-9, and James 1:2-5 I know it's hard to even pick up your Bible, but if you don't and if you turn away from God and stay sore to Him and His plan, you’re letting Satan take something the Lord has His hand on away from you. You would be letting the devil win by giving up your faith in God, His love, and His ability to do miracles. Jessica, you, Chole, and your family are on my heart and in my prayers. I pray that my post has touched you and helped you. I only wish I could do more.
Love, Your sister in Christ,
Rachel
Praying for you and yours, Jessica. Anything at all I can do to help, even from this distance, please let me know.
Jesus, please bring Your healing and Your perfect love into this situation. Your ways are perfect, but it's hard for us to see when we are in the middle of things. Please bring strength and encouragement into the lives of these Your children. Please help them to see You clearly, brightly, extravagantly even in the midst of what must seem in some moments like horrible darkness. Shine your light. Wrap this family in Your love, dear Jesus, Father, Holy Spirit.
amen. Let it be so.
Jess,
I will pray that God will continue to give you and Bobby His strength to persevere, peace that surpasses all understanding, hope that is unshaken, comfort in your affliction, and joy in the midst of this trial.
Rachel... First I want to say thank you for your kind encouraging words and for being so open and sharing your story. I am truly sorry for your loss. I wish there were words I could say that would give you some comfort as you gave me but I none. The only thing I can think of is something I was talking to a girlfriend of mine about recently when she was going through her miscarriage. I personally believe that God has a special plan of redemption for unborn children. I don't know how it works but I believe that they go to heaven. That said I think if I were to find myself in your shoes I would draw comfort in the knowledge that Ok as a mom we want the best for our kids right? We wish we could take away scraped knees and the flu. Plus we know that they will get thier feeling hurt, scare you to death, break your heart at times and you have to pray over and teach them about their sin and their need for a Saviour. As a mom we say we would do anything to be able to take that all away right? Well. Your two precious babies by-passed all that. They went from the warmth and comfort of the womb into the presence of the Most High and His warmth and comfort. They will never feel pain, loss, sickness and heartbreak. And when you enter Heaven it will be a reunion made all the sweeter by the meeting of these two wonderful people.
I have no idea if that helps, I have never gone through your loss before, but I pray it may help a bit.
Norma, thank you so much for your prayers. They are truly felt.
Micah....Thank you, and when are you coming home btw? We miss you
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