In minutes we went from having a good day with a strong little baby boy, holding his head up, good tone, babbling, squealing and very alert to a grand mal seizure, very weak, no tone, no babbling, out of it because of the seizure, ativan to stop the seizure which still continue another 45 minutes, then a rag doll, sats dropping so he is back on oxygen. So now here I am mad as a hornet. I hate the rollercoaster ride. I was walking around mad and God kept asking me where's my thanks, where's praise. Praise for what God? Quickly he showed me.
Within minutes of me sending out the email concerning the mepilex I received tons of resources for us to order it. We knew we could purchase it but we were hoping someone had some stash of it some where which often happens on some of the medical listservs we are on. Well my precious long time friend Lisa emailed me and told me to email Drew. He is a family friend of theirs and has been emailing me for awhile to share his prayers for our family. Well long story short he has two boxes he is sending free of charge. AMAZED - yes! Blessed - yes! Praising God - yes!
Then I was fussing and complaining about Abe being back on oxygen. Quickly God sent my focus to the oxygen tank. He is on 1/8 of a liter. God reminded me that just a few days ago he was on 1/2 liter. I heard one of our precious NICU nurses saying you never take steps backwards, always go forward never backwards. Praising God!
Then I said ok God look at him he is out of it. God asked me to look at him again. He said is he having seizures. No God, he is resting peacefully. OK. Praising God!
One of the reasons I didn't want to start the diet until after his first birthday was because I so wanting him to have some birthday cake and icing. I open up an email from the ketogenic listserv and it's a recipe for a keto cake. OK God point taken. Praising God!
So this is where we are RIGHT NOW. We will start the keto diet again tomorrow morning and pray that things go smoothly. Also I want to keep an open mind and realize adjustments will have to be made.
A scripture my sweet friend sent me this morning was 1 Cor. 7:17 You must accept whatever situation the Lord has put you in and continue on as you were when God first called you.
You know I think it should say accepting with a thankful and joyful heart cause if not it really gets me down. It's much easier to accept it thankfully than battle against it. Also it helped me so much more to focus on others than myself. There are so many people around us in need. So many times I think I have nothing to give. I can't get out and run errands, send money or help out. I realized the biggest need in most people's lives is time. Most people just need our time, just to say hey how can I help, how can I pray. Just to say I am here. I am listening and I will help! Thanks so much for ya'll's time and for lifting us up in prayer.
I hope that ya'll have a beautiful day and find the blessings that God has given you. They are there!!!
Friday, January 30, 2009
Thursday, January 29, 2009
A new baby!
OK did that subject get ya'll's attention? Not a new baby for Mike and I but for our family. Mike's sister Paige is having a baby. We are so very excited!!! I couldn't sleep last night because I am so very overwhelmed with this miracle from God. I am so proud for them and cannot wait to meet my new niece or nephew. Please be praying for Paige that her pregnancy will go well and everything will be fine. Please pray for a healthy baby.
Thanks so much!!!
Thanks so much!!!
Monday, January 26, 2009
Update on Abe
I was hit or should I say greeted first thing this morning with the following scripture.
2Consider it pure joy, my brothers, whenever you face trials of many kinds, 3because you know that the testing of your faith develops perseverance. 4Perseverance must finish its work so that you may be mature and complete, not lacking anything. James 1:2-4
It wasn't long before I knew why I was given that scripture by God. Within minutes of giving Abe a full keto feeding early this morning he threw it all up. I was scared because I knew since the keto feeds had not been keeping his sugar up like usual that his sugar was going to be really low. I checked it and sure enough it was 40. He is not supposed to drop below 65. I gave him 2 oz of breastmilk. It brought his sugar right back up. Once I knew he was going to keep that down I gave him his meds.
I decided to try another keto feed when it was time for him to eat again. Big mistake. Same thing. Throwing up and sugars down. So I decided I would only do breastmilk until I heard from the doctor. Dr. Holt, Mo and the nutrionist were going to get together to decide what to do.
We have a new formula recipe with more breastmilk instead of RCH to hopefully help with his sugar level. However I wasn't aware that his sugar has to stay low for him to be in ketosis. All this is so new and I am learning for very much. Including he cannot use lotion or chapstick or anything for that matter that has sugar in it.
We have decided that we are going to give him a few days without keto feeds to get him back to himself and give his body a rest. We want to make sure there is nothing questionable going on with him that we are blaming on the diet. We will keep his schedule of eating every 3 hours though.
Mo is also checking into other options just in case this doesn't work. We do want to give the diet a fair chance but not at the risk of Abe's health.
Thank ya'll so very much for your prayers!
It has been a very long day. I am praying that the night will be uneventful.
2Consider it pure joy, my brothers, whenever you face trials of many kinds, 3because you know that the testing of your faith develops perseverance. 4Perseverance must finish its work so that you may be mature and complete, not lacking anything. James 1:2-4
It wasn't long before I knew why I was given that scripture by God. Within minutes of giving Abe a full keto feeding early this morning he threw it all up. I was scared because I knew since the keto feeds had not been keeping his sugar up like usual that his sugar was going to be really low. I checked it and sure enough it was 40. He is not supposed to drop below 65. I gave him 2 oz of breastmilk. It brought his sugar right back up. Once I knew he was going to keep that down I gave him his meds.
I decided to try another keto feed when it was time for him to eat again. Big mistake. Same thing. Throwing up and sugars down. So I decided I would only do breastmilk until I heard from the doctor. Dr. Holt, Mo and the nutrionist were going to get together to decide what to do.
We have a new formula recipe with more breastmilk instead of RCH to hopefully help with his sugar level. However I wasn't aware that his sugar has to stay low for him to be in ketosis. All this is so new and I am learning for very much. Including he cannot use lotion or chapstick or anything for that matter that has sugar in it.
We have decided that we are going to give him a few days without keto feeds to get him back to himself and give his body a rest. We want to make sure there is nothing questionable going on with him that we are blaming on the diet. We will keep his schedule of eating every 3 hours though.
Mo is also checking into other options just in case this doesn't work. We do want to give the diet a fair chance but not at the risk of Abe's health.
Thank ya'll so very much for your prayers!
It has been a very long day. I am praying that the night will be uneventful.
Friday, January 23, 2009
I'll take it!
Ok for some reason the email I wrote yesterday about God being good didn't go through until this morning even though it was written yesterday. So now I have more to share. Ya'll get the blunt of my oh whoa is me emails so here is some praises to share with people in our life that praise (taken from Carrie). I hope that like my dear friend Mary Jane ya'll can hear and feel the excitement in my words. I hope ya'll can read my joy that came from God because I trust He has my baby in His arms and He would lead us in the right direction with this.
Well food means A LOT to me! It's a real comfort. I so wish it wasn't but I love it. Especially if it's good food. Well last night I got a phone call and Uncle Papa was cooking for me. Well probably not just me but it couldn't been for just me the way it made me feel. I was so excited and enjoyed every bite of it. YUM!!! I was ready to take on a new night.
Well around 1:30 this morning I noticed Abe's oxygen level was 99. He usually, well as of late hovers around 93. Still throughout the night he was having seizures. Not the screaming ones thankfully. Oh and last night when I picked him up he was solid and held his on body more. It shocked me. I thought it was just in my mind. I took him to Mike and said feel him. He held him and was suprised too. I didn't tell him what I was thinking and he thought it immediately. His muscle tone was better. This morning he is babbling and squealing away in between his seizures. YES I'll take it!!!
I prayed that God would give me a breather. Some good moment with him in the middle of all these seizures. Thank you God. Thank you to the "special" lunch time prayers that went up for us yesterday. Thank you!!! Thanks everyone for all the prayers.
I don't know if it's the Keto diet already. I will check his ketones this morning to see. I have a feeling it's the vigabatrin because I increased it again. Whatever it is I'll take it and I am determined not to look back and say why didn't we increase vigabatrin before now. OK I said it then and I am sure I might say it again but I will not dwell on it cause I can't change the past.
OK gotta go and mix up more keto drink for my precious little boy God has loaned me for a little while. I hope that your day is over flowing with God's blessings. Watch out for that special blessing that God is sending your way. Don't miss it!!!
Thanks again for all the prayers!!!
Well food means A LOT to me! It's a real comfort. I so wish it wasn't but I love it. Especially if it's good food. Well last night I got a phone call and Uncle Papa was cooking for me. Well probably not just me but it couldn't been for just me the way it made me feel. I was so excited and enjoyed every bite of it. YUM!!! I was ready to take on a new night.
Well around 1:30 this morning I noticed Abe's oxygen level was 99. He usually, well as of late hovers around 93. Still throughout the night he was having seizures. Not the screaming ones thankfully. Oh and last night when I picked him up he was solid and held his on body more. It shocked me. I thought it was just in my mind. I took him to Mike and said feel him. He held him and was suprised too. I didn't tell him what I was thinking and he thought it immediately. His muscle tone was better. This morning he is babbling and squealing away in between his seizures. YES I'll take it!!!
I prayed that God would give me a breather. Some good moment with him in the middle of all these seizures. Thank you God. Thank you to the "special" lunch time prayers that went up for us yesterday. Thank you!!! Thanks everyone for all the prayers.
I don't know if it's the Keto diet already. I will check his ketones this morning to see. I have a feeling it's the vigabatrin because I increased it again. Whatever it is I'll take it and I am determined not to look back and say why didn't we increase vigabatrin before now. OK I said it then and I am sure I might say it again but I will not dwell on it cause I can't change the past.
OK gotta go and mix up more keto drink for my precious little boy God has loaned me for a little while. I hope that your day is over flowing with God's blessings. Watch out for that special blessing that God is sending your way. Don't miss it!!!
Thanks again for all the prayers!!!
God is good!
Whenever we transition into something new it's a stressful time for me. I make it that way probably more than it should be. Well today our precious friend Danisa came over to spend the day and help out. What a HUGE blessing from God this was. When she planned it we did not know we would be starting the Keto diet today. We didn't get to spend as much time just sitting as talking as I would have liked but having her here gave me such a wonderful peace. Marlee Anne loved playing games with her and kept her very busy. She brought lunch and Michala loved her feeding her and snuggling with her. She drove all the way from Alabama to spend the day to help out. It's a God thing and such an amazing and blessed friendship.
Abe has had 2 Keto feeds. So far so good. He seems to be tolerating them well. We still have a couple of meds to transfer over to sugar free. Mike and Marlee Anne have gone now to get adult tylenol, motrin and benadryl. I never thought about how many children's meds have so much sugar in them to help with the taste. One of his compounded meds has to be ordered and it will be next week sometime. I am not sure how close to Ketosis he can get with his regular med cause I am not sure the exact amount of sugar in it. We ended up having to go with pill form of Cortef because it cannot be compounded with sugar free and made a thin enough liquid. We increased his dose a little and will just keep an extra close check on his glucose.
I think that's all for now. Thank you so much for your prayers. Thanks to everyone that has helped with my crazy questions! I am sure there will be more.
Abe has had 2 Keto feeds. So far so good. He seems to be tolerating them well. We still have a couple of meds to transfer over to sugar free. Mike and Marlee Anne have gone now to get adult tylenol, motrin and benadryl. I never thought about how many children's meds have so much sugar in them to help with the taste. One of his compounded meds has to be ordered and it will be next week sometime. I am not sure how close to Ketosis he can get with his regular med cause I am not sure the exact amount of sugar in it. We ended up having to go with pill form of Cortef because it cannot be compounded with sugar free and made a thin enough liquid. We increased his dose a little and will just keep an extra close check on his glucose.
I think that's all for now. Thank you so much for your prayers. Thanks to everyone that has helped with my crazy questions! I am sure there will be more.
Tuesday, January 20, 2009
Abe needs a miracle
Tomorrow we are taking Abe to Egleston to meet about the Keto diet. I am nervous about starting it but feel good that this may be Abe's miracle. That's really what he needs right now.
His phenobarbital level is way too high so we have started decreasing that. Not a good thing for Abe because his body seems to really like the phenobarb and seems to help his seizures. I started decreasing his Vigabatrin on the 14th and not long after that the seizures started getting really bad. This happened the one other time we tried to decrease it. So now we think it is doing more than we thought. I increased it this morning and after discussion with neuro I gave him another 250 mg. I also gave him extra Topomax and we will keep both of those increases. Tonight I will start decreasing Orapred.
OK on to tomorrow. We will go to Egleston to Keto clinic. I am typing this as I think it through so bare with me. Typically the child is hospitalized to do a rapid induction phase with fasting. Because of Abe's panhypopituartarism and hypoglycemia we will not be doing the fasting or the rapid induction. We have chosen to do this outpatient also. One of the reasons we wanted the muscle biopsy results is so it would help us make the decision on whether to try the Keto diet. For mitochondrial patients the diet can be very dangerous. I feel like we will be aware and watch for signs of it making him sick. Hopefully we will catch it before it sends his mito out of wack too bad and makes him regress even more. This has been very sad for me to watch.
This will be a gradual thing that we will let his body kind of get into ketosis on it's own time. Please pray that we will have a better understanding of the risk involved and a clear direction for him.
His phenobarbital level is way too high so we have started decreasing that. Not a good thing for Abe because his body seems to really like the phenobarb and seems to help his seizures. I started decreasing his Vigabatrin on the 14th and not long after that the seizures started getting really bad. This happened the one other time we tried to decrease it. So now we think it is doing more than we thought. I increased it this morning and after discussion with neuro I gave him another 250 mg. I also gave him extra Topomax and we will keep both of those increases. Tonight I will start decreasing Orapred.
OK on to tomorrow. We will go to Egleston to Keto clinic. I am typing this as I think it through so bare with me. Typically the child is hospitalized to do a rapid induction phase with fasting. Because of Abe's panhypopituartarism and hypoglycemia we will not be doing the fasting or the rapid induction. We have chosen to do this outpatient also. One of the reasons we wanted the muscle biopsy results is so it would help us make the decision on whether to try the Keto diet. For mitochondrial patients the diet can be very dangerous. I feel like we will be aware and watch for signs of it making him sick. Hopefully we will catch it before it sends his mito out of wack too bad and makes him regress even more. This has been very sad for me to watch.
This will be a gradual thing that we will let his body kind of get into ketosis on it's own time. Please pray that we will have a better understanding of the risk involved and a clear direction for him.
Monday, January 19, 2009
I just need to share
Home from surgery before the bad seizures started back. Happy not to have that tube down his nose. Mommie's sweet sweet boy!
His sisters came to see him. Oh yes and see the bed. Yes thats the bed the nurse had me climb up in with him.
He smiled when I fed him the first time through his gtube. I guess I did ok.
Knew I would need a remember to see how far we have come and how much he has healed.
Right after surgery.
Miss Brenda doing gtube training with the baby.
Right before surgery.
A beautiful view out the window of the garden. Abe loves his daddy so much!
He had just gotten into his room. He looked so much better than I was expecting. His color looked really good.
I realized tonight it has been a few days since I emailed. My heart is full and I need to sort through some thoughts.
Going back to Abe's gtube surgery because it was kinda hard to write all I wanted to from my phone. Have a list of specific prayer request made so much of a difference. One reason was it broke down the prayers that were really needed. Our father says ask and He will answer. He did. I want to share with you specifically how they were answered.
Please pray for Abe's body to be prepared for the gtube placement and the muscle biopsy. I believe his body was ready for the gtube surgery but maybe not the muscle biopsy and that's why it was cancelled. I was nervous and never felt comfortable about the muscle biopsy being done how it was going to be done. God in His own time right at the last minute, the day before said ok it's not time.
Pray for the surgeon, along with all the doctors and nurses that will be providing care for Abe during the surgery and the following days. We could not have picked a more wonderful, loving and caring surgeon for Abe. Dr. Bhatia is truly amazing. The doctors that had him in his care we hand picked by God. God even had Aunt Dr. Helen doing a chest tube at 9:00 PM so she got to come up and see her little Abe. Such a blessing for us! The nurses were AMAZING!!!! The day nurse and tech we had for two days was great. She was the best release nurse we have ever had I think. She really helped with gtube questions.The one we had the first night was from neuro so I felt a peace about how things would be handled if he had a seizure. The gtube training nurse Brenda from the surgical team was great. You can see a picture of her on our blog teaching me with the gtube training baby.
Please pray that his body heals quickly and correctly without too much pain. This seemed to be the case and we were so very thankful.
Pray that this will help with so much more than we realize. It has already made life easier because he does not pull it out everyday making me put it back in.
Pray that his seizures will be non-existent as he recovers. His seizures were minimal and nothing compared to his previous surgey.
Pray he is able to come out of the anethesia easily and off oxygen. He came out of the anethesia beautifully! He still hasn't come off the oxygen.
Pray that we will allow God to minister through us to the families, children, doctors and nurses that we come in contact during all this. Pray that His grace, love and mercy shines through us. This is one of those things we continually hope for but sometimes never know or see it.
Please pray for the girls as Abe & I are away. Pray that Mary Elizabeth will eat and stay well and strong. Pray that Michala will have a hedge of protection from her seizures during this time. Pray for Marlee Anne's sweet heart, that she will stay strong, be a helper and not be sad while we are gone. Pray she stays busy and the time passes by quickly for all of us. Please pray for Mike, his tender heart, that he will have the strength and patience he needs to take care of the girls and work while we are gone. Pray for everyone that graces our doorstep and blesses our family during this time. Pray that the schedule of people keeping the girls during this time falls into place. Pray that it all goes smoothly. Pray that our home is surrounded by angels and protected from satan so that stress doesn't cause discord between now and then. Well what can I say, God definitely answered prayers here. We are so very thankful for family and friends willing to love our girls in a time of need. Mike even brought all three of the girls up to see us. There will be a picture on the blog of them coming to visit if I don't get to send it through the email.
Pray that our marriage and family will once again grow stronger as we join together as a family and allow God to guide us through this. I am amazed by God's power as I see Him working through us, through our individual lives and as a family. I am thankful that He sees the perfect picture that he has formed. I am thankful that because of Him the pieces fit perfectly.
Thank ya'll so very much for your prayers. OK on to the next prayers. You know that I could not end this without asking for more. Our precious little baby is stuggling. Please pray for complete healing. As I ask you to pray for this I am believing it can happen. I know that God's timing is not our timing. I know that this journey here is only a blink of an eye. I know that He is preparing us for our home. I know that He has lent us Abe as part of His perfect plan. He has chosen us to take care of His precious little one until He calls him home. It is my prayer that Mike and I along with Abe's doctors and Mo make the right decisions about medicines for Abe. His precious little body has blocked out our little one. Good days to me mean that Abe is there. He is alert, looking around, knowing that we are there with him. For the past week Abe has not been there but only briefly. For the past few days Abe has not been there at all. He is drugged and out of it or when he is awake he is having seizures non-stop. I want his body to have some relief, a day without seizures, ok half day, an hour awake without a seizure. I know I have said this before but I do not think I am asking for a lot. I know without a doubt that when Mary Elizabeth gets to those pearly gates she will run through them. Her heavenly father will be the first one to hear the precious sound of her voice. Michala will NEVER ever have another seizure. Her heavenly father is sure to be prepared for her sassy reply as she walks, yes walks on those TWO beautiful long legs of hers through those pearly gates as she says it's about time or what took so long. I am not asking for that here in our temporary home. Right now I am asking for some relief for my baby RIGHT NOW. Just right now.
Over the past few days I have been deemed a hero by three very special people in my lives, all of which have endured more than they should ever have to endure in their lives and they have called me their hero. One of the definitions of a hero is one that shows great courage. That's not me. It's my children that are so willingly fighting this fight to live. I am sure it's not easy for them. To borrow words from my sweet friend I know I have loved them into surviving. It's not me that's the hero it's them.
All God ask of us is to become more and more like Him. It's not an easy feat especially for me. I try. I want to be but I know that's not enough. It's like if you didn't eat or drink and you I am not going to go without those. Well days when I don't think I have the time to spend time with God in His word, on my knees and at His feet I get knocked down to my knees quite frequently. Then I look at my children and I see how perfect they are. They are everything God wants me to be. Mary Elizabeth, Michala and Abe know without a doubt that I will be here for them. They know that I will literally carry them wherever they need to go. I will provide for their every need. They don't doubt, they don't question, the trust and believe with all their heart that I will always be there for them. Sounds easy. Sounds simple. Then why is it so hard for me to do that. Why is it so hard for me to trust God fully. I am getting there. Each day God is working on me. It hurts too cause I am not in a very moldable place at the moment. I have got some pebbles, rocks and maybe even a few stones that are hindering me from allowing God to mold me.
OK so once again I rambled and made this a lot longer than I should but my heart feels good. I love getting all the jumbled stuff straightened out and the negativeness out completely so that God can fill it with His blessings. I am ready for it to overflow with God's goodness.
Thank you for your prayers. Thank you for seeing God answer those prayers.
With grateful love,
Kelli
Going back to Abe's gtube surgery because it was kinda hard to write all I wanted to from my phone. Have a list of specific prayer request made so much of a difference. One reason was it broke down the prayers that were really needed. Our father says ask and He will answer. He did. I want to share with you specifically how they were answered.
Please pray for Abe's body to be prepared for the gtube placement and the muscle biopsy. I believe his body was ready for the gtube surgery but maybe not the muscle biopsy and that's why it was cancelled. I was nervous and never felt comfortable about the muscle biopsy being done how it was going to be done. God in His own time right at the last minute, the day before said ok it's not time.
Pray for the surgeon, along with all the doctors and nurses that will be providing care for Abe during the surgery and the following days. We could not have picked a more wonderful, loving and caring surgeon for Abe. Dr. Bhatia is truly amazing. The doctors that had him in his care we hand picked by God. God even had Aunt Dr. Helen doing a chest tube at 9:00 PM so she got to come up and see her little Abe. Such a blessing for us! The nurses were AMAZING!!!! The day nurse and tech we had for two days was great. She was the best release nurse we have ever had I think. She really helped with gtube questions.The one we had the first night was from neuro so I felt a peace about how things would be handled if he had a seizure. The gtube training nurse Brenda from the surgical team was great. You can see a picture of her on our blog teaching me with the gtube training baby.
Please pray that his body heals quickly and correctly without too much pain. This seemed to be the case and we were so very thankful.
Pray that this will help with so much more than we realize. It has already made life easier because he does not pull it out everyday making me put it back in.
Pray that his seizures will be non-existent as he recovers. His seizures were minimal and nothing compared to his previous surgey.
Pray he is able to come out of the anethesia easily and off oxygen. He came out of the anethesia beautifully! He still hasn't come off the oxygen.
Pray that we will allow God to minister through us to the families, children, doctors and nurses that we come in contact during all this. Pray that His grace, love and mercy shines through us. This is one of those things we continually hope for but sometimes never know or see it.
Please pray for the girls as Abe & I are away. Pray that Mary Elizabeth will eat and stay well and strong. Pray that Michala will have a hedge of protection from her seizures during this time. Pray for Marlee Anne's sweet heart, that she will stay strong, be a helper and not be sad while we are gone. Pray she stays busy and the time passes by quickly for all of us. Please pray for Mike, his tender heart, that he will have the strength and patience he needs to take care of the girls and work while we are gone. Pray for everyone that graces our doorstep and blesses our family during this time. Pray that the schedule of people keeping the girls during this time falls into place. Pray that it all goes smoothly. Pray that our home is surrounded by angels and protected from satan so that stress doesn't cause discord between now and then. Well what can I say, God definitely answered prayers here. We are so very thankful for family and friends willing to love our girls in a time of need. Mike even brought all three of the girls up to see us. There will be a picture on the blog of them coming to visit if I don't get to send it through the email.
Pray that our marriage and family will once again grow stronger as we join together as a family and allow God to guide us through this. I am amazed by God's power as I see Him working through us, through our individual lives and as a family. I am thankful that He sees the perfect picture that he has formed. I am thankful that because of Him the pieces fit perfectly.
Thank ya'll so very much for your prayers. OK on to the next prayers. You know that I could not end this without asking for more. Our precious little baby is stuggling. Please pray for complete healing. As I ask you to pray for this I am believing it can happen. I know that God's timing is not our timing. I know that this journey here is only a blink of an eye. I know that He is preparing us for our home. I know that He has lent us Abe as part of His perfect plan. He has chosen us to take care of His precious little one until He calls him home. It is my prayer that Mike and I along with Abe's doctors and Mo make the right decisions about medicines for Abe. His precious little body has blocked out our little one. Good days to me mean that Abe is there. He is alert, looking around, knowing that we are there with him. For the past week Abe has not been there but only briefly. For the past few days Abe has not been there at all. He is drugged and out of it or when he is awake he is having seizures non-stop. I want his body to have some relief, a day without seizures, ok half day, an hour awake without a seizure. I know I have said this before but I do not think I am asking for a lot. I know without a doubt that when Mary Elizabeth gets to those pearly gates she will run through them. Her heavenly father will be the first one to hear the precious sound of her voice. Michala will NEVER ever have another seizure. Her heavenly father is sure to be prepared for her sassy reply as she walks, yes walks on those TWO beautiful long legs of hers through those pearly gates as she says it's about time or what took so long. I am not asking for that here in our temporary home. Right now I am asking for some relief for my baby RIGHT NOW. Just right now.
Over the past few days I have been deemed a hero by three very special people in my lives, all of which have endured more than they should ever have to endure in their lives and they have called me their hero. One of the definitions of a hero is one that shows great courage. That's not me. It's my children that are so willingly fighting this fight to live. I am sure it's not easy for them. To borrow words from my sweet friend I know I have loved them into surviving. It's not me that's the hero it's them.
All God ask of us is to become more and more like Him. It's not an easy feat especially for me. I try. I want to be but I know that's not enough. It's like if you didn't eat or drink and you I am not going to go without those. Well days when I don't think I have the time to spend time with God in His word, on my knees and at His feet I get knocked down to my knees quite frequently. Then I look at my children and I see how perfect they are. They are everything God wants me to be. Mary Elizabeth, Michala and Abe know without a doubt that I will be here for them. They know that I will literally carry them wherever they need to go. I will provide for their every need. They don't doubt, they don't question, the trust and believe with all their heart that I will always be there for them. Sounds easy. Sounds simple. Then why is it so hard for me to do that. Why is it so hard for me to trust God fully. I am getting there. Each day God is working on me. It hurts too cause I am not in a very moldable place at the moment. I have got some pebbles, rocks and maybe even a few stones that are hindering me from allowing God to mold me.
OK so once again I rambled and made this a lot longer than I should but my heart feels good. I love getting all the jumbled stuff straightened out and the negativeness out completely so that God can fill it with His blessings. I am ready for it to overflow with God's goodness.
Thank you for your prayers. Thank you for seeing God answer those prayers.
With grateful love,
Kelli
Saturday, January 17, 2009
Croppin' For A Cause
Ya'll I am so very excited about this Croppin' for A Cause. Some of you may not know that February of 2008, actually on Valentine's Day, God blessed our family with a baby boy who quickly stole my heart. Two days into his life we started on a medical rollercoaster with him. Before long we realized that we now have 3 special needs children in our home. This cause has always meant so much to us but now we realize the need for it more and more.
Chimney Park is a universal accessible park that will be located in Covington, Georgia. There will be a secret garden, trails, handicapped accessible treehouse and playground. Right now we are desperately trying to raise the $300,000 to pay for the construction documents. It is our hopes that this fundraising crop will help a little towards that cost.
I am attaching the flyer to this email. Please distribute it so that we can get the word out. If you don't scrapbook but would like to volunteer to help out that day please email me. You can also make a tax deductible donation if you would like. Donations can be mailed to the address below or paypal account daddyhop@bellsouth.net . Door prizes, auction items, food or drinks would be welcome also. Of course we always welcome your prayers for a successful event.
Thanks so very much to those who have walked this journey with us not only through the past year but over the past almost 16 years. Ya'll are such a blessing to us.
Croppin’ For A Cause
March 14, 2009
Eastridge Community Church
863 Highway 142 E
Covington, GA
8:00 AM – 6:00 PM
$35 before February 27th
$45 after February 27th
Breakfast, lunch, goody bags, door prizes and auction items.
All proceeds benefit Chimney Park
Please make checks payable to Chimney Park and mail to:
please leave comment for address
Registration before February 27th guarantees a goody bag.
Chimney Park is a universal accessible park that will be located in Covington, Georgia. There will be a secret garden, trails, handicapped accessible treehouse and playground. Right now we are desperately trying to raise the $300,000 to pay for the construction documents. It is our hopes that this fundraising crop will help a little towards that cost.
I am attaching the flyer to this email. Please distribute it so that we can get the word out. If you don't scrapbook but would like to volunteer to help out that day please email me. You can also make a tax deductible donation if you would like. Donations can be mailed to the address below or paypal account daddyhop@bellsouth.net . Door prizes, auction items, food or drinks would be welcome also. Of course we always welcome your prayers for a successful event.
Thanks so very much to those who have walked this journey with us not only through the past year but over the past almost 16 years. Ya'll are such a blessing to us.
Croppin’ For A Cause
March 14, 2009
Eastridge Community Church
863 Highway 142 E
Covington, GA
8:00 AM – 6:00 PM
$35 before February 27th
$45 after February 27th
Breakfast, lunch, goody bags, door prizes and auction items.
All proceeds benefit Chimney Park
Please make checks payable to Chimney Park and mail to:
please leave comment for address
Registration before February 27th guarantees a goody bag.
Tuesday, January 06, 2009
It's me again!
I am supposed to be sleeping because the gave Abe some IV toradol for his pain. He has been screaming in pain. Now he is resting.
I just gave him his meds for the first time through the gtube. I was nervous but it went well.
I am writing because I need some prayers. I cried out earlier and a very sweet friend of mine read through the lines. I have to share what she wrote because it covers my feelings, feelings I didn't want to admit I was having.
Here is what she wrote. "you are upset bc it's yet another realization that things didn't turn out the way you thought they would... they way they should if we lived in a prefect world. we'd have perfect children and they'd never hurt or get sick and they most certainly would never have life threatening conditions. they could never be snatched away from us in an instant now matter how hard we pray for God to heal them. It's about finding out we couldn't feed them and after all... if mom can't do it what in the world good are we."
Man how true. So I need prayers for me. Putting all the stuff aside that I know this was the right decision. I know its for his safety and will help him. I know without a doubt that God will carry me through. The feelings she described is something I need to deal with. They will come back another time like she reminded me but hopefully not for a long time.
Ok I am off to get some rest. Thanks ya'll for listening to my cries of help!
On a neat note Dr. Bhatia took pictures of the inside of Abe's stomach for us. They are really cool. I will scan them when I get a chance so I can share them with ya'll. Mike said it looked really good and was really clean.
Oh one more prayer. Please pray for Mike has he takes all 3 girls to the dentist tomorrow by himself. I have no doubt he can do it but Michala can be quite the challenge.
Ok I am gone for now. Our new nurse will be on soon. Pray for a good one please.
I just gave him his meds for the first time through the gtube. I was nervous but it went well.
I am writing because I need some prayers. I cried out earlier and a very sweet friend of mine read through the lines. I have to share what she wrote because it covers my feelings, feelings I didn't want to admit I was having.
Here is what she wrote. "you are upset bc it's yet another realization that things didn't turn out the way you thought they would... they way they should if we lived in a prefect world. we'd have perfect children and they'd never hurt or get sick and they most certainly would never have life threatening conditions. they could never be snatched away from us in an instant now matter how hard we pray for God to heal them. It's about finding out we couldn't feed them and after all... if mom can't do it what in the world good are we."
Man how true. So I need prayers for me. Putting all the stuff aside that I know this was the right decision. I know its for his safety and will help him. I know without a doubt that God will carry me through. The feelings she described is something I need to deal with. They will come back another time like she reminded me but hopefully not for a long time.
Ok I am off to get some rest. Thanks ya'll for listening to my cries of help!
On a neat note Dr. Bhatia took pictures of the inside of Abe's stomach for us. They are really cool. I will scan them when I get a chance so I can share them with ya'll. Mike said it looked really good and was really clean.
Oh one more prayer. Please pray for Mike has he takes all 3 girls to the dentist tomorrow by himself. I have no doubt he can do it but Michala can be quite the challenge.
Ok I am gone for now. Our new nurse will be on soon. Pray for a good one please.
Monday, January 05, 2009
No muscle biopsy
Thank ya'll so very much for your prayers! Thank you to those of you that emailed and let me vent even further with you. I hope that this email will help answer some of those questions.
Abe will not be having his muscle biopsy done tomorrow. Awhile back after discussing with his doctors the possibility and need for a muscle biopsy, Dr. Krawiecki, a doctor that I have loved and admired for years said that he would prefer Dr. Shoffner to do it. He definitely wanted a fresh biopsy. You get clearer answers from a fresh muscle biopsy and the can have some saved and frozen for further testing.
Without getting into too many medical details and/or hospital politics, Dr. Kendall - the mito doc was at one time fairly recently in practice with Dr. Shoffner. She left and went to Emory. Dr. Shoffner is in Atlanta and did Mary Elizabeth's muscle biopsy 15 years ago. Well we wanted Dr. Kendall to see them but wanted Dr. Shoffner to do the muscle biopsy. If we went with Dr. Kendall on the muscle biopsy it would have to be frozen and sent to Baylor. Frozen muscle biopsies have a high false positive rate. It crutial that everything and everyone was in place tomorrow at the time of Abe's surgery. The muscle tissue could only stay on ice for a certain amount of time so the currier had to be ready. Then they had to make sure the right person was in place at Emory to process the muscle to be frozen and shipped to Baylor. That's why Abe could not be first on the surgery list. His surgery is later in the morning because the Emory genetics lab had to be opened for the processing. I hope all this makes sense and helps answer some of the questions about the importance of Dr. Kendall still being there. If this was done wrong or anything at all messed up Abe would have to have his other thigh cut for more tissue for another biopsy. Not a risk we or any of his other doctors are willing to take. We would like for this to be as accurate as possible so we know which direction to go in with Abe to get him the best possible treatment. So long story short this has been going on for months. Discussing with all his doctors what should be done and what would be best for Abe.
There was also concern about his body handle two surgeries at one time. If he does in fact have a mito disease then it could cause too much stress for his body to handle. Then there is the risk of putting him to sleep yet again if the muscle biopsy is done in the future. If he has a mito disease the risk of him being put to sleep is greater each time. Emory is working on upgrading equipment to possibly do fresh biopsies in the future so that's a possibility. Then there is always the possibility of getting Dr. Shoffner to do the biopsy which is what we were praying for to begin with. He is pretty booked for years but we will see what happens. So for now no muscle biopsy just his gtube.
I have a peace about this that I haven't had the entire time with this. I am so thankful that a firm decision was made. I feel much better and ready to go get this gtube done. Excited about what God has in store for this little baby of His. Thank you so very much for your prayers.
Oh and the way the decision came about was when Mo ran into Dr. K today. She told him that Dr. Kendall had left Emory and he said so ok Abe's biopsy is off right. He didn't hesitate. Mo talked with more of Abe's doctors and no one but Dr. Kendall wanted the biopsy done.
Thanks again for your prayers!!!
Abe will not be having his muscle biopsy done tomorrow. Awhile back after discussing with his doctors the possibility and need for a muscle biopsy, Dr. Krawiecki, a doctor that I have loved and admired for years said that he would prefer Dr. Shoffner to do it. He definitely wanted a fresh biopsy. You get clearer answers from a fresh muscle biopsy and the can have some saved and frozen for further testing.
Without getting into too many medical details and/or hospital politics, Dr. Kendall - the mito doc was at one time fairly recently in practice with Dr. Shoffner. She left and went to Emory. Dr. Shoffner is in Atlanta and did Mary Elizabeth's muscle biopsy 15 years ago. Well we wanted Dr. Kendall to see them but wanted Dr. Shoffner to do the muscle biopsy. If we went with Dr. Kendall on the muscle biopsy it would have to be frozen and sent to Baylor. Frozen muscle biopsies have a high false positive rate. It crutial that everything and everyone was in place tomorrow at the time of Abe's surgery. The muscle tissue could only stay on ice for a certain amount of time so the currier had to be ready. Then they had to make sure the right person was in place at Emory to process the muscle to be frozen and shipped to Baylor. That's why Abe could not be first on the surgery list. His surgery is later in the morning because the Emory genetics lab had to be opened for the processing. I hope all this makes sense and helps answer some of the questions about the importance of Dr. Kendall still being there. If this was done wrong or anything at all messed up Abe would have to have his other thigh cut for more tissue for another biopsy. Not a risk we or any of his other doctors are willing to take. We would like for this to be as accurate as possible so we know which direction to go in with Abe to get him the best possible treatment. So long story short this has been going on for months. Discussing with all his doctors what should be done and what would be best for Abe.
There was also concern about his body handle two surgeries at one time. If he does in fact have a mito disease then it could cause too much stress for his body to handle. Then there is the risk of putting him to sleep yet again if the muscle biopsy is done in the future. If he has a mito disease the risk of him being put to sleep is greater each time. Emory is working on upgrading equipment to possibly do fresh biopsies in the future so that's a possibility. Then there is always the possibility of getting Dr. Shoffner to do the biopsy which is what we were praying for to begin with. He is pretty booked for years but we will see what happens. So for now no muscle biopsy just his gtube.
I have a peace about this that I haven't had the entire time with this. I am so thankful that a firm decision was made. I feel much better and ready to go get this gtube done. Excited about what God has in store for this little baby of His. Thank you so very much for your prayers.
Oh and the way the decision came about was when Mo ran into Dr. K today. She told him that Dr. Kendall had left Emory and he said so ok Abe's biopsy is off right. He didn't hesitate. Mo talked with more of Abe's doctors and no one but Dr. Kendall wanted the biopsy done.
Thanks again for your prayers!!!
Prayers again please!
Ya'll it's me AGAIN! I am feeling very anxious and nervous about Abe's surgery. I have never felt this way about any of his or the girl's surgeries. I have of course been nervous but not unsettled like this. Right before New Year's Abe and Mary Elizabeth's mitochondrial specialist left Emory. So there is no one there right now that we can find that knows about Abe's muscle biopsy. I just talked with Mo and she has calls in all over. If we do not have a resolution by the end of today Abe will not have his muscle biopsy tomorrow. It would be awful to have taken his tissue and having it sit at the Emory lab because no one knows how to process it. So my prayer request are to please pray that this gets settled by today and that I will have the peace about this that I know will come. Thank you so very much!
Tomorrow I will send emails from my phone as they take him back and all that. They will most likely be short and sweet so that they will hopefully make sense. Thanks so much for praying with us through all this.
Much love and appreciation!
Kelli
Tomorrow I will send emails from my phone as they take him back and all that. They will most likely be short and sweet so that they will hopefully make sense. Thanks so much for praying with us through all this.
Much love and appreciation!
Kelli
Saturday, January 03, 2009
Statio
This was post from a friend of mine.
I have recently been thinking about how hectic life has become...I have desired to live in a way that is more conscious...more aware...more intentional. In the fast paced life that I lead, I often go from one thing to the next without transition and without truly being present. Always thinking of the next thing or the last thing, but rarely of the thing at hand. I took the piece below from a blog (www.nottoomuch.com).
I had recently read of the practice of Statio or Station, in a book by Phillip Yancey, and I had decided that I would try to incorporate the practice into my life this year...
Anyway, interesting, insightful.
"Tomorrow, it's back to work after the Christmas break. In the midst of an usually-too-hectic work life, this is a favourite story I tell my colleagues:
While visiting the University of Notre Dame, where I had been a teacher for a few years, I met an older experienced professor who had spent most of his life there. And while we strolled over the beautiful campus, he said with a certain melancholy in his voice, 'You know ... my whole life I have been complaining that my work was constantly interrupted, until I discovered that my interruptions were my work.'— Henri J. Nouwen, Reaching out: the three movements of the spiritual life. London: Collins, 1976, p52.
Always there is balance. Joan Chittister writes about the Benedictine practice of statio, "the practice of stopping one thing before we begin another.
"It is the time between times. It is a cure for the revolving door mentality that is common in a culture that runs on wheels. In monastic spirituality it is common for the community to gather outside of chapel in silence before beginning prayer or at least to gather for a few minutes together in the chapel itself before intoning the opening hymn of the office.
My novice mistress, in fact, insisted that we all be in chapel five minutes before the bell rang for prayer, an expectation the logic of which managed to elude me for years. After all, "an idle mind is the devil’s workshop," the Puritan in me knew well. "Every minute counts," I’d learned somewhere along the way. "Time is golden," the samplers taught. Think of all the things that could have been done in that additional five minutes a day or thirty-five minutes a week or two hours and twenty minutes a month or twenty-eight hours a year: another chapter of typing, another batch of thank you notes composed, another wash ironed, another set of papers corrected. Work, valuable work, could have been done and I could still have made it on time for prayer.
It took years to realize that, indeed, I could have gotten all that work done and still had my body in chapel in time for prayer. It is highly unlikely, though, that my mind would have been there too. The practice of station is meant to center us and make us conscious of what we’re about to do and make us present to the God who is present to us. Statio is the desire to do consciously what I might otherwise do mechanically. Statio is the virtue of presence.
If I am present to this child before I dress her, then the dressing becomes an act of creation. If I am present to my spouse in the living room, then marriage becomes an act of divine communion. If I am present to the flower before I cut it, then life becomes precious. If I am present to the time of prayer before I pray, then prayer becomes the juncture of the human with the Divine.
We have learned well in our time to go through life nonstop. Now it is time to learn to collect ourselves from time to time so that God can touch us in the most hectic of moments.
Statio is the monastic practice that sets out to get our attention before life goes by in one great blur and God becomes an idea out there somewhere rather than an ever present reality here.— Joan Chittister OSB. Wisdom distilled from the daily: living the rule of St. Benedict today.. San Francisco: Harper, 1991, pp. 176-178."
I have recently been thinking about how hectic life has become...I have desired to live in a way that is more conscious...more aware...more intentional. In the fast paced life that I lead, I often go from one thing to the next without transition and without truly being present. Always thinking of the next thing or the last thing, but rarely of the thing at hand. I took the piece below from a blog (www.nottoomuch.com).
I had recently read of the practice of Statio or Station, in a book by Phillip Yancey, and I had decided that I would try to incorporate the practice into my life this year...
Anyway, interesting, insightful.
"Tomorrow, it's back to work after the Christmas break. In the midst of an usually-too-hectic work life, this is a favourite story I tell my colleagues:
While visiting the University of Notre Dame, where I had been a teacher for a few years, I met an older experienced professor who had spent most of his life there. And while we strolled over the beautiful campus, he said with a certain melancholy in his voice, 'You know ... my whole life I have been complaining that my work was constantly interrupted, until I discovered that my interruptions were my work.'— Henri J. Nouwen, Reaching out: the three movements of the spiritual life. London: Collins, 1976, p52.
Always there is balance. Joan Chittister writes about the Benedictine practice of statio, "the practice of stopping one thing before we begin another.
"It is the time between times. It is a cure for the revolving door mentality that is common in a culture that runs on wheels. In monastic spirituality it is common for the community to gather outside of chapel in silence before beginning prayer or at least to gather for a few minutes together in the chapel itself before intoning the opening hymn of the office.
My novice mistress, in fact, insisted that we all be in chapel five minutes before the bell rang for prayer, an expectation the logic of which managed to elude me for years. After all, "an idle mind is the devil’s workshop," the Puritan in me knew well. "Every minute counts," I’d learned somewhere along the way. "Time is golden," the samplers taught. Think of all the things that could have been done in that additional five minutes a day or thirty-five minutes a week or two hours and twenty minutes a month or twenty-eight hours a year: another chapter of typing, another batch of thank you notes composed, another wash ironed, another set of papers corrected. Work, valuable work, could have been done and I could still have made it on time for prayer.
It took years to realize that, indeed, I could have gotten all that work done and still had my body in chapel in time for prayer. It is highly unlikely, though, that my mind would have been there too. The practice of station is meant to center us and make us conscious of what we’re about to do and make us present to the God who is present to us. Statio is the desire to do consciously what I might otherwise do mechanically. Statio is the virtue of presence.
If I am present to this child before I dress her, then the dressing becomes an act of creation. If I am present to my spouse in the living room, then marriage becomes an act of divine communion. If I am present to the flower before I cut it, then life becomes precious. If I am present to the time of prayer before I pray, then prayer becomes the juncture of the human with the Divine.
We have learned well in our time to go through life nonstop. Now it is time to learn to collect ourselves from time to time so that God can touch us in the most hectic of moments.
Statio is the monastic practice that sets out to get our attention before life goes by in one great blur and God becomes an idea out there somewhere rather than an ever present reality here.— Joan Chittister OSB. Wisdom distilled from the daily: living the rule of St. Benedict today.. San Francisco: Harper, 1991, pp. 176-178."
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