Teething

Wow 17 years old and still the last 2 molars fighting there way up through the gum. What a weekend! From fever over waking up at 4 am to a sudden loud cry into the silence of the early morning hours. First to find out what this is about then seeing the tip of the tooth peeking quite a  piece through the gum framed with a sore looking fire red gum. Putting on doTERRA clove oil every 15 minutes with an earbud, we are all finally back to sleep after an hour. Never had much teething issues when Celina was a baby. Who would have thought or seen this coming. Looks like we are going the full on teething thing with fever followed by a bit of a cough and a slight snot nose. Monday morning after struggling with flem a change of position and fast asleep again. Tucked in safe and warm. Thank You Lord for guiding me through this.

We are back

Hi everybody

This blog had been very quiet for a long while but that will not stay like this. Get ready for another season of Celina's life. Here is a photo for starters of a much taller and older Celina. 17 years old now and a gorgeous young lady. My jeansy teenager.

Help Celina

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)

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.