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Saturday, June 20, 2009

Update on Bianca

Firstly I want to thank each of you that covered my family in prayer when we needed it so badly. I have had a number of e-mails from you to enquire about her, so I thought it easier just to do an update here on my blog.

Bianca is still very tired today. Her tongue is so swollen that she eats with difficulty and her whole body aches because of the severe muscle spasms during the episode. This morning she crawled into bed with us for coffee. She started joking about getting a big enough baby car seat that she can be strapped in whereever she is sitting so that she does not fall "next time". (My prayer is that there will not be a next time). She also joked about wearing dayglo green gumguards permanently so that she does not bite herself. I sat in amazement at her positive attitude...

She had her first episode in 2005 in church. She was part of the praise and worship team and as she walked off the stage she fell and the seizure began. It was the first time ever that I saw this and when she started turning blue (they don't breathe during the seizure) the thought that crossed my mind is that we were going to lose her. Scary stuff! At the time the neurologist did not want to medicate her until "next time." They did a MRI and found what in medical terms are called "Mesial temporal sclerosis". In lay language it means that there is a lesion on her temporal lobe which causes epilepsy. The doctors reckon that the damage could have been done when she had meningitis at age 9 months. She has what they call "complex partial seizures" that lasts for a few minutes. She comes around fully after approximately 2 hours...she might respond to surroundings during the two hours but has no recollection of it afterward. Scary!!!

The next episode occurred in 2007 and she was put on anti-seizure medication. What really concerns me is that despite the medication the period between seizures are getting shorter every time. She had her third seizure in February this year and now again. I received a message from a pharmacist last night. She did a lot of research on epilepsy and she suggests that a mix of different medication be used until the problem is brought under control.

My dream for my daughter is that she can lead a normal life. She struggles with her short term memory and have to work so much harder at her studies. At present she is not allowed to drive at all, she is not allowed to swim alone, bath or cook while nobody is home. In actual fact I find it difficult to leave her alone...I always worry about her. I know...where is my faith? That is the exact reason why I find this so difficult in my Christian walk. I can handle almost anything that life throws at me, but when my children or grandchildren are involved...I fail the test misarably.

13 comments:

  1. Sjoe, this is really SUCH a hard one. I really don't know what to suggest. I can just imagine how it must be SO difficult for you all & for her, and how frustrating. I'm sure you've already done it but I suggest you do some internet reaearch on it & get a few opinions. At least if there was a way of knowing that the medication would stop any further seizures you could all relax a lot more. ;-D

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  2. Hi! Thanks for visiting my blog-
    I know what you mean about hardship, and asking "Why, God?" My mother is in the early stages of a memory disorder-and it is a difficult journey to be a part of...I find myself being a caregiver to her as well as my own children sometimes...It is the fear of the future that gets me sometimes-
    So I will pray with you-because God has promised us all that He will NOT give us more than we can handle, and He is always faithful-
    Love and Blessings to you today!
    R.R.S

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  3. Thanks for sharing and giving more insight into the after effects. I have not seen a grande mal seizure and didn't know they hurt for so long afterwards or the memory loss.

    So horrible to have someone you love go through that.

    I think we all fail that test and that's ok too.
    Loves.

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  4. Lynette I thought about you a lot today and your words still ring in my ears "she is always with someone who loves her". You are a wonderful mother and I am sure that your hugs and support make a huge impact to the way she is able to handle it.

    xxxxx

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  5. Oh jislaaik my friend. I can not imagine what it feels like in your shoes today. I have no words for you but I do know that Christ knows your pain, your anxiety, your helplessness and He stands with arms wide open. I will continue my prayers for you in this - I also fail dismally in this area but He is faithful nonetheless. Much love and I wish I could pop over and hang with you. xxx

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  6. Oh my prayers and thoughts are with you! I think the Lord knows that when our kids and grandkids are involved we are weak. Don't be too hard on yourself. We would all struggle in this area. When you are weak He is strong!

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  7. I wonder how you would counsel someone else who came to you with this situation. . .
    Would you say to them:
    "Where is your faith?!
    You are failing miserably."
    And add condemnation to their pain?
    Would Jesus?

    You are doing amazingly -
    Be a little kinder to yourself, my friend.

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  8. Hugs Lynette! I so hope they can find a way to control this for her...you are so strong. I hope she is feeling better soon...prayers coming to you!

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  9. I think that part of being a mother is to sometimes feel that we fail the test, but God made us emotional beings and He understands us completely. Don't be so hard on yourself, I know that the Lord is right by your side and feeling for you.

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  10. Do you have any idea how much your kind words have meant to me over these days. I would love to hang with all of you because you are so amazing.

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  11. My heart goes out to you Lynette. I have a baby who went through so much at the age of two months. It is heartbreaking for mothers to witness the pain of their children. Hang on and be strong. Keep faith Lynette. She will always have the protection of our Lord and Savior.

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  12. Hi Lynette. Ek voel regtig vir julle, want ek dink nie enigiemand kan verstaan waardeur julle gaan nie ... soveel onsekerheid oor wat die dag van more kan bring. 'n Mens kan net bly glo en vertrou al is dit soms baie moeilik om die lewe te verstaan. Sterkte.

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