The spasms are back. I have been fearing this for weeks; whenever I saw weird movement my stomach would drop. I fought back a panicky feeling by rationalizing why what I saw wasn't a spasm. I tried to talk myself out of believing that I had seen spasms, but deep down in my heart I knew what I saw. Now it has been confirmed by her EEG. The doctors haven't officially read it yet, but when we talked to the neuro in the hospital, he said her last EEGS showed that nasty spasm pattern called hypsarrhythmia. He will read the entire EEG this weekend and then we are expecting to hear from him early next week.
I am kind of numb to this news. I was expecting it, but it still wasn't easy to hear. I feel like we are back to square one; after a year of fighting these stupid seizures, we aren't any further along in getting rid of them. Part of me feels like giving up on meds and treatment. Maybe we should wean her off all the meds and just see what she does. What do we have to lose at this point? Maybe the meds make her cognitively worse... who knows? Further steroid treatments sound exhausting.
But, I can't give up. All I can do for my little girl is fight and hope. Hope that she will some day be able to put a cheerio in her owm mouth and that eventually she will be able to look me right in the eye and say "mommy". Hope that I will get to see her sit up on her own and take her first steps. I will not give up on her; God is not done with her yet. To hope is to survive and so I choose to be hopeful and to live this day to the fullest.
"I will live today loving my child as she is right now, and not project fearful possibilities in the future" -- anynomous from Changed By a Child
14 comments:
Ugh, what a sinking feeling hearing the news. But you're right, HOPE is what you have to hang on to. And our only hope is where, in the Lord.
Kelly I am just numb for you. I'm so sorry to hear this news. I'm shaking my fist. It's so easy to ask WHY?? But I will have hope with you. Hope and prayer are two things that will not be abandoned. Praying for Ruby and for you guys too.
Praying for you guys. So glad you are holding on to HOPE.
Kelli, I am so sorry to hear about this. It is a day that we all fear and I am so sorry that you are having to relive it once again. I am praying for you and your family and please know that we are supporting you no matter what you decide to do. Let me know if you need anything. Amy and Katelyn
I'm so sorry. :( Knowing they came back is so tough, I pray that God leads you to make the right decisions for Ruby and to give you peace and hope.
Kelli, I am so sorry. But I know as a mom you will not stop fighting for your daughter. There are incredibly smart people out there, but the mom-smart sometimes is even better. Follow your instincts. Kelli, Ruby loves you. She may not say it yet, but she loves you very much! Hold on to that.
Kelli, I am so sorry that poor Ruby is again suffering.....I will continue to pray that the ultimate Healer brings a touch of forever healing to her little body! Praying for peace for both you and your DH during this time as well!!!!
May God give you strength, understanding and answers soon. We're praying for you!
Kelli, my heart dropped as I read this too. I am so sorry and we will definitely be praying for direction as you determine what to do with her next. We serve a big God and we pray that He will help you through this next step! I love you!!
I'm so sorry, Kelly. We will continue to pray for strength for all of you.
Ruby is in our prayers...my heart hurts for you.
Oh Kelly, my heart breaks for you but Ruby has a great mom and dad! Praying for you and little Ruby. May God give you the peace that you need.
We will be praying for hope and peace for you in the midst of these difficult times.
Sarah Schreuder (Rottman)
....can't find the right words....hope is what we cling to ---and each other...you are all loved and prayed for daily!
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