Well as you may know, we came home from hospital on Friday and have had to continue with the wraps on little livi's hands and feet and continue with all the meds to not only keep her from scratching but help her little body to heal. Through the course from day one of finding out livi was sick I have asked for prayers from all my family and friends, those I know, those I dont know who are miles and hours away. I thank you all who pray for my "special" gifts from God. This has been an exceptionally hard time with livi because trying to make her comfortable literally in her own skin has also shoen to be very uncomfortable. Watching her endure the first whirlpool treatment was heart wrenching. You could see the shear terror and pain in her eyes as she cried and screamed and all I could do was pat her and say it's ok while I had to hold back tears and cry inside to God asking for Him to give her comfort. The last few days since coming home have proved that God has heard my cry as well as the cries of many others that livi find comfort. She is tolerating the wraps very well and doesn't scratch as much as she has been so her little skin is beginning to heal. PRAISE GOD!!! Thank you to all who have prayed, continue to pray for her, it means more than you may ever know.
We have an upcoming neurology visit on the 14th of February and I ask that you please pray for some insight into how livi is feeling, functioning and how we can better learn to live and help her on a daily basis. It is very hard to watch her cry and scream for periods of time and not knowing what she wants and her not knowing how to express her need. Is she in pain? Did she have a seizure that I didn't see? Did she hurt herself? It's so hard to be a mom and no that no matter what you offer, you can't offer a "fix" to the problem. I can offer reassurance, I can offer love, I can offer open arms, prayer but thats not an instant to the current upset. Please pray that as the doctor evaluates her that he sees her as his, and that he chooses to help her in a way he would want his child helped. I pray that God is in the hearts of those who will become the drs that help livi and teach us how to help her daily. I pray that as decisions are made, the drs look to God first, then their books.
Again, I cannot say thank you enough for all that everyone has done for my girls. I will try to keep updates going as much as possible. We are adding new treatments to our weekly routine so please be in prayer that adjustments come easy. The prayers that flow from here to our Heavenly Father cannot be sent enough and when anyone says "What can I do???" Thats all I know, just pray. It works. So thanks for reading, praying, passing along the blog and being such signs of strength, encouragement and faith when mine seems to disappear in the midst of my trials. My love to you all from me and my family.
Sunday, January 29, 2012
Friday, January 27, 2012
Updates on the girls and tests
Well as you know from the blog it's been awhile since post have been put on. I do greatly apologize for that, things have been a little crazy and I know that this is how many keep informed about sam and livi, so please forgive me.
Update on Livi....through all the testing that was done back in november and december, the results are as follows. The tests showed there are pedi maul seizures but it's non-specific. Not linked to just light sensitivity, over stimulation, television and unknown if it's food. The vascular malformation in her brain can cause seizures as well as her tumor on the paratoid gland and she has been newly diagnosed with Celiac Disease which as well can cause seizures. For her new diagnosis, she has been put on a gluten-free diet and praise God she seems to be tolerating it very well and having no problems. She has had some setbacks that I would appreciate prayer for. We are supposed to see a developmental neurologist on Feb 14 because she has begun to have crying and screaming fits for unknown reasons, is not sleeping well at night and chooses to eat off and on, no regular eating habits. We were in the dr's office for checkups for sam and hannah and livi screamed for 2 hours and the dr made phone calls that day because she was concerned that there is something going on that may have been missed. I am so thankful to have such a wonderful dr and that she cares for my children as if they were her own. God gives many blessings and I count that as one of them!! As some may know, we are currently in the hospital being treated for her exzema. She underwent a whirlpool treatment yesterday and is supposed to recieve two today. The whirlpool is supposed to break up the dry skin and scabs from her scratching like crazy and then meds are put in water and on her skin and then wrapped to help her heal and not get a staph infection. This has been difficult, but know it is necessary in keeping her well and comfortable. This for now will become a part of our weekly routine. We will now recieve radiation, therapy and the whirlpool treatment for now . Livi doesn;t like the tub but has done well with the wraps, I ask you please continue to pray for comfort and peace.
Update on Sam....bone scan and blood tests showed that cancer is still in pelvic area, contained has not grown but has not shrunk. Dr says with her immune being down for soo long she may take longer to really respond to treatments but he feels very good that she will recover. She begins another round of radiaton this week and chemo as well will start again, with the dosage being increased this time. She seems to handle things very well, but when she doesnt know any different I guess it's no big deal to her. She has been complaining again lately that her legs hurt which is normal for where the cancer is, but she takes meds and keeps going. Wish I had the energy to accept what is and just keep going.....Man it's hard. She's had a rough time with me being gone this time but Im thankful for my family who is caring for her and hannah and thankful my mom has such an understanding, christian man as her principal at the school and allowed her to be off when needed to care for my babies at home when I can't be there myself.
I ask that as you read this, please pass it on so that those who read will stop once and awhile to say a prayer for my babies. Prayer is the best gift anyone could give them, because I know that when two or more are joined together, God hears their cries. I pray for comfort and peace for sam and livi and for their little spirits to continue to be as happy and carefree as always. I ask that prayers for hannah be that of understanding and acceptance that even though we dont like what has become "normal" in our lives, God chose US to care for these precious babies and that through this she becomes as strong as I know she really is, even though she doesnt see it yet.
Thanks again to all who help my babies and my family in soo many ways, from them being put on prayer lists, being prayed over the dinner table, from the phone calls, visits to the simple texts. There will never be a way I can ever repay each and everyone of you for what you have shown me. God's undying love for me is what you have shown me and I only pray that I can do that for someone in their time of need as you all have done for me in my time. May God Bless each of you who reads this and passes it on down the prayer chain. Love to each of you!
Update on Livi....through all the testing that was done back in november and december, the results are as follows. The tests showed there are pedi maul seizures but it's non-specific. Not linked to just light sensitivity, over stimulation, television and unknown if it's food. The vascular malformation in her brain can cause seizures as well as her tumor on the paratoid gland and she has been newly diagnosed with Celiac Disease which as well can cause seizures. For her new diagnosis, she has been put on a gluten-free diet and praise God she seems to be tolerating it very well and having no problems. She has had some setbacks that I would appreciate prayer for. We are supposed to see a developmental neurologist on Feb 14 because she has begun to have crying and screaming fits for unknown reasons, is not sleeping well at night and chooses to eat off and on, no regular eating habits. We were in the dr's office for checkups for sam and hannah and livi screamed for 2 hours and the dr made phone calls that day because she was concerned that there is something going on that may have been missed. I am so thankful to have such a wonderful dr and that she cares for my children as if they were her own. God gives many blessings and I count that as one of them!! As some may know, we are currently in the hospital being treated for her exzema. She underwent a whirlpool treatment yesterday and is supposed to recieve two today. The whirlpool is supposed to break up the dry skin and scabs from her scratching like crazy and then meds are put in water and on her skin and then wrapped to help her heal and not get a staph infection. This has been difficult, but know it is necessary in keeping her well and comfortable. This for now will become a part of our weekly routine. We will now recieve radiation, therapy and the whirlpool treatment for now . Livi doesn;t like the tub but has done well with the wraps, I ask you please continue to pray for comfort and peace.
Update on Sam....bone scan and blood tests showed that cancer is still in pelvic area, contained has not grown but has not shrunk. Dr says with her immune being down for soo long she may take longer to really respond to treatments but he feels very good that she will recover. She begins another round of radiaton this week and chemo as well will start again, with the dosage being increased this time. She seems to handle things very well, but when she doesnt know any different I guess it's no big deal to her. She has been complaining again lately that her legs hurt which is normal for where the cancer is, but she takes meds and keeps going. Wish I had the energy to accept what is and just keep going.....Man it's hard. She's had a rough time with me being gone this time but Im thankful for my family who is caring for her and hannah and thankful my mom has such an understanding, christian man as her principal at the school and allowed her to be off when needed to care for my babies at home when I can't be there myself.
I ask that as you read this, please pass it on so that those who read will stop once and awhile to say a prayer for my babies. Prayer is the best gift anyone could give them, because I know that when two or more are joined together, God hears their cries. I pray for comfort and peace for sam and livi and for their little spirits to continue to be as happy and carefree as always. I ask that prayers for hannah be that of understanding and acceptance that even though we dont like what has become "normal" in our lives, God chose US to care for these precious babies and that through this she becomes as strong as I know she really is, even though she doesnt see it yet.
Thanks again to all who help my babies and my family in soo many ways, from them being put on prayer lists, being prayed over the dinner table, from the phone calls, visits to the simple texts. There will never be a way I can ever repay each and everyone of you for what you have shown me. God's undying love for me is what you have shown me and I only pray that I can do that for someone in their time of need as you all have done for me in my time. May God Bless each of you who reads this and passes it on down the prayer chain. Love to each of you!
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