God's beautiful creation
Saturday, October 29, 2016
Monday, September 12, 2016
Slowly going forward
I guess it took a little longer to get back here. Well here I am. I was on tablets for the fungi in my toe nails and those weren't agreeing with my body at all. I had to stop them because I wasn't myself anymore at all. Couldn't even think straight anymore and lots of terrible side effects. I didn't wanted to do anything anymore not even cooking. Anyway I got through it and am back to normal and on the go.
Celina was struggling with spasms for quite some time again and that also cost me all my energy. And I begged God more or less to make an end to this. 2 Sundays ago in the church service God spoke to me and said that Celina would eat normal in this coming week again.
Monday came and went with liquid feeds the same for Tuesday and Wednesday. I thought "When God?" I guess obedience, faith and action is a part of having what God says you have. Thursday Celina's school had an outing. I wanted to take Celina. She hadn't been really out in a while. I wasn't going to take the feeding machine with me. Oh no. So, I decided this was the time to take a step of faith. No feeding machine during the day anymore only a small night feed to keep up calories and with that weight. I put together an eating plan calculated the water and divided it over the day and started. And guess what the spasms where suddenly gone after having again a terrible night from Wednesday to Thursday since Thursday morning nothing anymore, no spasms very little seizures and lots of laughing again. Thank you Lord. 3 main meals, 2 snacks and about a liter of water plus 400 ml night feed. Tomorrow morning I will have to weigh her to see how much she has put on. I don't want to overdo it. And also with the time we want to get rid of the night feed. Solid food has always worked best with Celina. I just have to be a little careful with the water because with drinking she swallows air and that means trouble. I give most of the water still through the tube for that reason.
I am on a big research mission too for the last month or so. I want to start Celina on something new at least new for us, I just found out about it recently. And it might get Celina to a whole new level. So watch this space.
On the other hand, after long thinking about it and getting all doubts out of the way we decided we will fight for the payment of Celina's lower jaw surgery. Last week Wednesday I send the motivation to the medical aid. Now we are waiting for their response. They said it is going to take 14-28 days. We are 6 days along the way. If they are still saying no we have to do a huge fundraiser. Well and there is still another option. But I really really hope for the medical aid to approve. Thank you Lord. Amen.
That's it for now and I promise the next post I will have some photos again.
Praise the Lord for He is good all the time. When we trust Him and Him only, things will happen. Thank you Lord.
"The Thief does not come except to steel and to kill and to destroy, I have come that they may have life, and that they may have it more abundantly"
(John 10:10 NKJ)
Celina was struggling with spasms for quite some time again and that also cost me all my energy. And I begged God more or less to make an end to this. 2 Sundays ago in the church service God spoke to me and said that Celina would eat normal in this coming week again.
Monday came and went with liquid feeds the same for Tuesday and Wednesday. I thought "When God?" I guess obedience, faith and action is a part of having what God says you have. Thursday Celina's school had an outing. I wanted to take Celina. She hadn't been really out in a while. I wasn't going to take the feeding machine with me. Oh no. So, I decided this was the time to take a step of faith. No feeding machine during the day anymore only a small night feed to keep up calories and with that weight. I put together an eating plan calculated the water and divided it over the day and started. And guess what the spasms where suddenly gone after having again a terrible night from Wednesday to Thursday since Thursday morning nothing anymore, no spasms very little seizures and lots of laughing again. Thank you Lord. 3 main meals, 2 snacks and about a liter of water plus 400 ml night feed. Tomorrow morning I will have to weigh her to see how much she has put on. I don't want to overdo it. And also with the time we want to get rid of the night feed. Solid food has always worked best with Celina. I just have to be a little careful with the water because with drinking she swallows air and that means trouble. I give most of the water still through the tube for that reason.
I am on a big research mission too for the last month or so. I want to start Celina on something new at least new for us, I just found out about it recently. And it might get Celina to a whole new level. So watch this space.
On the other hand, after long thinking about it and getting all doubts out of the way we decided we will fight for the payment of Celina's lower jaw surgery. Last week Wednesday I send the motivation to the medical aid. Now we are waiting for their response. They said it is going to take 14-28 days. We are 6 days along the way. If they are still saying no we have to do a huge fundraiser. Well and there is still another option. But I really really hope for the medical aid to approve. Thank you Lord. Amen.
That's it for now and I promise the next post I will have some photos again.
Praise the Lord for He is good all the time. When we trust Him and Him only, things will happen. Thank you Lord.
"The Thief does not come except to steel and to kill and to destroy, I have come that they may have life, and that they may have it more abundantly"
(John 10:10 NKJ)
Saturday, July 2, 2016
They are stubborn
The paediatrician called the medical aid again with no success. They standing on their point that we are not covered on this plan for this surgery. I spoke this week to the broker for Lufthansa for this medical aid and he came back to me with the same information even worse surposedly there is no plan with this medical aid that covers this kind of procedure. I am not in agreement with this. So I have some more questions on Monday for the broker. He said the only other thing we can try is to motivate for ex-gratia which I certainly will do. Furthermore he is still waiting for an answer of another medical aid we could change over to but only in January.
I have collected already some paperwork to be used for the appeal. Looks like now all the work and fight is once again left with me. So, lets see what the next week brings.
Celina is kind of like fine yet is spasming a little here and there again. I don't know where this is leading to. I am getting so much better with my liquid food mission and am managing to get 5 liters done in one day. Yay. If I could get 8 liters done I would just need to be in the kitchen for that purpose once a week. A stronger blender would be good with at least 1000W. And to be able to go shopping just once a week or do monthly shopping for the none perishables and once a week for the fresh stuff, that would make life so much easier. Unfortunately I am struggling with the financial side of this. With making the rice milk and coconut milk myself we have come down a whole almost R !000 a month in cost. Yet still needing about R1500 to cover Celina's food and even worse from August we have no savings anymore with our medical aid and with that have to find on top of it money for Celina's medication and also supplements which she urgently needs. Trying to get oneself out of this hole with the increasing food, petrol and other living costs constantly increasing it seems to be difficult enough without having those extra costs of a special needs child. Very little people actually understand that. Celina is in adult nappies for some years now since she doesn't fit in baby ones anymore and that alone is an extra of R 800 a month. For those who have children you just payed those for about 2-3 years and that was baby nappies which are still much cheaper. Just to give you an idea that we have in these last 14 years spent over R60 000 in nappies and that is just a small percentage of Celina's costs. Well anyways. God has always provided yet in case you wonder He doesn't have money trees or machines. He uses people to help each other. Do you know that if each of us just helps one person with something we would not have poor people. If someone knocks on my door which is not seldom in South African houses I always try to find something in my fridge or cupboard to give from the little I have in spite of struggling with Celina's costs. Our car has no brakes so I am walking to the shop and pharmacy and am really shocked how many people are on the street in this ice cold and wet weather out there. I thank my father in heaven every day that I still have a roof over my head and a warm bed to sleep in. And I believe that my Father in Heaven will provide us also with a new home.,(having to leave our flat actually since April already and not knowing what the landlord is going to do next). It would be just nice to just have some help with some of our little burdens. Celina unfortunately has not much choice at the moment she can't be without nappies or her special foods or supplements to keep her healthy and out of hospital. And then there are still syringes feeding tube, giving sets for the feeding machine, linen savers, gloves, wet wipes etc etc etc. And yes we are asking for 14 years already regularly for help because we can't keep up with the costs. I give you another example. I guess you all wanted to buy your child a bicycle at some point of time. This probably cost you about .... maybe a R 1000??? I just got a quote in for a bicycle for Celina to be able to sit on. I would love that ... yet R 85 000 well I guess not. The same goes for a walker to try and get her walking or a wheelchair. Same kind of price. All put together I guess you go and buy a nice car. I am not judging anybody or wanting to be nasty just trying to show you what kind of things we have to think about and struggle with. And that is besides normal living costs, not even thinking of ever going out for supper or cinema or even just to get some take out.
Thanks for reading my posts and I will update again next week as soon as I have news from our broker. And thanks to those who do understand and are always there for us and not to forget those prayer warriors who are keeping us in their constant prayer. Be blessed abundantly.
Thank you Lord for always in some way providing for us. For never leaving nor forsaking us. And mostly for loving us so much. We could not have gone through these last 14 years without you. Your Arms are the place of comfort, rest, love and strength. Praise the Lord.
I have collected already some paperwork to be used for the appeal. Looks like now all the work and fight is once again left with me. So, lets see what the next week brings.
Celina is kind of like fine yet is spasming a little here and there again. I don't know where this is leading to. I am getting so much better with my liquid food mission and am managing to get 5 liters done in one day. Yay. If I could get 8 liters done I would just need to be in the kitchen for that purpose once a week. A stronger blender would be good with at least 1000W. And to be able to go shopping just once a week or do monthly shopping for the none perishables and once a week for the fresh stuff, that would make life so much easier. Unfortunately I am struggling with the financial side of this. With making the rice milk and coconut milk myself we have come down a whole almost R !000 a month in cost. Yet still needing about R1500 to cover Celina's food and even worse from August we have no savings anymore with our medical aid and with that have to find on top of it money for Celina's medication and also supplements which she urgently needs. Trying to get oneself out of this hole with the increasing food, petrol and other living costs constantly increasing it seems to be difficult enough without having those extra costs of a special needs child. Very little people actually understand that. Celina is in adult nappies for some years now since she doesn't fit in baby ones anymore and that alone is an extra of R 800 a month. For those who have children you just payed those for about 2-3 years and that was baby nappies which are still much cheaper. Just to give you an idea that we have in these last 14 years spent over R60 000 in nappies and that is just a small percentage of Celina's costs. Well anyways. God has always provided yet in case you wonder He doesn't have money trees or machines. He uses people to help each other. Do you know that if each of us just helps one person with something we would not have poor people. If someone knocks on my door which is not seldom in South African houses I always try to find something in my fridge or cupboard to give from the little I have in spite of struggling with Celina's costs. Our car has no brakes so I am walking to the shop and pharmacy and am really shocked how many people are on the street in this ice cold and wet weather out there. I thank my father in heaven every day that I still have a roof over my head and a warm bed to sleep in. And I believe that my Father in Heaven will provide us also with a new home.,(having to leave our flat actually since April already and not knowing what the landlord is going to do next). It would be just nice to just have some help with some of our little burdens. Celina unfortunately has not much choice at the moment she can't be without nappies or her special foods or supplements to keep her healthy and out of hospital. And then there are still syringes feeding tube, giving sets for the feeding machine, linen savers, gloves, wet wipes etc etc etc. And yes we are asking for 14 years already regularly for help because we can't keep up with the costs. I give you another example. I guess you all wanted to buy your child a bicycle at some point of time. This probably cost you about .... maybe a R 1000??? I just got a quote in for a bicycle for Celina to be able to sit on. I would love that ... yet R 85 000 well I guess not. The same goes for a walker to try and get her walking or a wheelchair. Same kind of price. All put together I guess you go and buy a nice car. I am not judging anybody or wanting to be nasty just trying to show you what kind of things we have to think about and struggle with. And that is besides normal living costs, not even thinking of ever going out for supper or cinema or even just to get some take out.
Thanks for reading my posts and I will update again next week as soon as I have news from our broker. And thanks to those who do understand and are always there for us and not to forget those prayer warriors who are keeping us in their constant prayer. Be blessed abundantly.
Thank you Lord for always in some way providing for us. For never leaving nor forsaking us. And mostly for loving us so much. We could not have gone through these last 14 years without you. Your Arms are the place of comfort, rest, love and strength. Praise the Lord.
Tuesday, June 21, 2016
What a disappointment
Everything went as planned. Although I got a little frustrated because the motivation letter for the authorization for Celina's surgery went just out on Friday. I spend most of the day with the medical aid either on the phone being dropped out of the line 3 times and then went on the chat line to get answers for another hour or so. Just to end up at about 4pm on Friday with a decline in all points. They just straight forward don't want to pay coming with all kinds of reasons that actually do not make sense at all. The surgeon was so disappointed I could hear it in his voice. The paediatrician is frustrated and I needed the whole weekend to pull through again. Since Monday I am trying to find testimonies of other Cerebral Palsy children who had this done to build up a case for an appeal to this decision. Further more both doctors are going on holiday so its all postponed to about in a month.
Reasoning for decline, they first said it is not covered on the plan we are on. And then also she needs to be first on a Mickey(feedingtube directly into her stomach) and also already on a trachea (breathing tube in the front of her neck). Helllllllllloooooooo????? Why must one be first half dead before they allow for a surgery. And both those things also require surgery and cost a lot of money. Which by the way would probably cover this surgery. Not even to speak of the hospital visits we might have in future because of this condition not being treated. And she is already on a nasal gastric feedingtube and formula or liquid food which is not exactly affordable. Oh yes and not to forget that she is a so called cerebral palsy child and these procedures are usually not done on these children. That gets me really going.
No,no,no this is just ridiculous and we are going to fight this decision. Up to the ombuts man if needed.
In all this my little angel is still smiling and laughing although also sounding a bit like a tractor because of the obstruction in her throat. I look at her and think my beautiful angel you really deserve better. And I will fight for you like I have done the last 12 years since her accident. And we have always won the wars and will win this one too. Giving up is not in my nature and I guess in no mother's nature when it is about your precious child, we fight to the end. That's just how God made us mothers.
With that said keep your eyes on the blog to see how it goes on.
If God is for us who can be against. He will never leave nor forsake us. He is our heavenly Father He is always by our side. Fighting for us. Thank you Lord.
Reasoning for decline, they first said it is not covered on the plan we are on. And then also she needs to be first on a Mickey(feedingtube directly into her stomach) and also already on a trachea (breathing tube in the front of her neck). Helllllllllloooooooo????? Why must one be first half dead before they allow for a surgery. And both those things also require surgery and cost a lot of money. Which by the way would probably cover this surgery. Not even to speak of the hospital visits we might have in future because of this condition not being treated. And she is already on a nasal gastric feedingtube and formula or liquid food which is not exactly affordable. Oh yes and not to forget that she is a so called cerebral palsy child and these procedures are usually not done on these children. That gets me really going.
No,no,no this is just ridiculous and we are going to fight this decision. Up to the ombuts man if needed.
In all this my little angel is still smiling and laughing although also sounding a bit like a tractor because of the obstruction in her throat. I look at her and think my beautiful angel you really deserve better. And I will fight for you like I have done the last 12 years since her accident. And we have always won the wars and will win this one too. Giving up is not in my nature and I guess in no mother's nature when it is about your precious child, we fight to the end. That's just how God made us mothers.
With that said keep your eyes on the blog to see how it goes on.
If God is for us who can be against. He will never leave nor forsake us. He is our heavenly Father He is always by our side. Fighting for us. Thank you Lord.
Sunday, June 12, 2016
Getting closer
Just over a week till surgery. I'll get more details this coming week from the doctors. I am having that very same feeling like I had before the hip op. Its like just want to get it behind me. I think the surgery time will be the worst again. Bringing her to theatre and then having to leave and waiting for 2 hours not knowing a thing that is going on. That kills the nerves. With the hip op I had Hayley. She came to the hospital and stayed with me until I got the sms from he anaesthetist(who by the way gave me via sms an update almost hourly)that they are done and to come to the theatre. I think I need someone like that again. Just to stay with me and keep my brain occupied to keep any negative thoughts away. I know there will be many people praying and I am very thankful for that. And it just so happens that Clint has really stupid shifts in that week and is just off on Friday. Anyway I'll give him updates via what's app.
Celina is doing well at the moment and we pray this will stay so. The devil is already greatly trying us but loosing the battle. About 2 weeks ago Clint was robbed at knife point on his way home from work. Both his phones and his gold necklace were stolen and last Friday when I was driving to work the car breaks failed while I was driving a downhill road towards a busy main road in morning traffic. Only God knows how I got out of that one alive. No scratch on me neither the car. I got past a busy crossing and at least 10 cars coming from either side. The angels must have been really busy all over around me getting me around all the cars save and sound. My hubby calls me now Schumi. I thank the Lord for both our lives.
And then there is still the liquid food journey. I am doing the 3-4 liters now in record time and with nearly no stress anymore. The only thing that's a little stressy is the provision of the ingredients. I did a calculation and with making the coconut milk and the rice milk myself we are coming on about R1400-1500 a month. Which is much less then the Peptamen. Thank the Lord. Still, its the middle of the month and the finances have reached their end again and we will need some help. My supply of liquid food will be finish by Monday(tomorrow) lunchtime. I will need a R 300 by early morning and another R300 latest by the end of the week to prepare for hospital and get everything done before Monday. On the left you find the donation account and also a list of foods needed for the liquid feeds for those who feel they would like to help. Thank you. Then it will be packing and getting ready and most probably admission on Tuesday.
And I need a lift to the shop cause the breaks are still not working and no money to fix them. Anybody know a mechanic???? Just asking.
Back to Celina. She is coping well with the liquid feeds and gets 2 small oral feeds to keep her mouth going. And a little oral water too. This goes very well. I am now also doing an hour of stretching her body and limbs every day. This is helping amazingly to keep her body a little looser. The only thing that is still not like it is supposed to be is the stool story. She is still struggling. Besides the laxative she is getting daily I have to give her something every 3 days to get it out. The laxative just keeps it soft.
The bone density scan we did still at hospital came back with the report saying: severe osteoporosis and fracture risk.
And then there was still the EEG result which wasn't too good either. They say she has ongoing seizure activity. Some we see and others that last 10 seconds are continuous and just happening in the brain and have no outward signs yet may cause that her brain has no chance to develop properly. That will be also still discussed and we will decide if we will try her on an anti convulsant. For the surgery and there after she will be getting one for sure for some time. All medications have to be reviewed after the bone growth is finished.
Yes I know this might not sound too great but my God got the last report. We got told about the osteopenia since 2010 and she is doing fine and seizures, well, she also had those most of the time here and there. With having been not well for a while this might just disappear again once her digestive system and jaw is sorted out. For now this is not a main focus. As long as Celina is not in pain and a happy chappy nothing to worry too much about. Loving her and making her life as comfortable as possible is most important.
Please keep praying for us.
Thank you Lord for carrying us through this one.
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