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.  

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. 

God created our body

One more comment to the growing of bones. I have thought a lot of this. Is it right to go and have this surgery done is it godly.

Well think of electricity. It exists since the beginning. Since Adam and Eve. Yet it took hundreds if not thousands of years before we had light, stoves, TVs, appliances etc.
But it was there. God created it when he made the earth with everything in it. It just needed someone to understand and use it. By trial and error a person developed light etc.
God made a lot of things when he made the earth it just needed people to use it and understand it and do something with it.

The same goes for the human body. This is God's miracle work. It is a whole amazing creation on its own. For example have you ever watched a wound healing all by itself. It doesn't really need help to heal. The brain, oh my word is still not fully explainable. A broken bone grows together again. It is just phenomenal what the body can do.

With that said and coming back to Celina's surgery and growing her bone is nothing else but God's work. God created our bones in a way that they can grow. Doctors just find the right method how to do this and use the bones ability to grow. When I look at Dr Hendricks I just see a man with great excitement of helping people in a major way to a better quality of life. He himself said he is just preparing, getting the tools and doing the surgery the rest is the same as for us ...... watching the body doing the rest and being totally amazed and exited what the body can do. And its not only the bone that will grow everything else around it grows with it the vessels, cells etc. because otherwise one would kind of like stretch the skin quite a bit.

Think about it and let it sink in and see God's creation all around you. It might just change your life. I could go on for pages but I will stop here and hope it caused something in you to be amazed, to think about or even change your life and getting a little closer to God.

Exciting things to come

This all started when we were in hospital in April this year. One morning the doctor looked at Celina and said "but Celina got apneoa". Celina was still sleeping. I asked her what in heaven is apneoa? It is when a person stops breathing for a couple of seconds in their sleep and then starts breathing again. I gave the doctor the whole story that we have a referral letter from the dentist and a report from an ENT to go to Tygerberg dental school for them to have a look at Celina. As far as the ENT explained, from upper lip upwards everything is OK and fine with Celina but from the lower lip downwards seems something not quite right and that is why we have the issues with breathing, eating, swallowing etc. But this happened last year and that is when we had no medical aid that is why we were send to a government hospital. And I pushed it until now to go because it is on the other side of town and we would need to be there at 8 am. And that's no fun driving in Cape Town when everybody tries to get to work.

Anyway she said but now we have medical aid and we are in hospital at the moment so why don't we have a maxillo facial surgeon have a look at her. So I said OK. So she said she will think about who she can ask. 

Well about an hour later this tall Indian looking guy in theatre clothes came to the ward and wanted to speak to me. Dr Hendricks is a maxillo facial surgeon and was asked to have a look at Celina. We chatted away and he had a look at her and gave me different options and said he needs to have scans and x-rays of Celina  to measure and study her lower jaw and to decide what the best method was to help her. What he could say for sure is that her lower jaw is too short and that is why everything is crowded in the back of her mouth. I also told he must be happy with medical aid rates because we have no money to pay extra. He said that he is not about money and I must go google him. Which I did and how amazed I was. He did some really amazing stuff on some people.

A little later the same day we went downstairs to do the x-ray and scan he needed. 

The following day we were discharged. Our Pediatrician still told me that she was still thinking who she could ask when she left the ward the day before and there Dr Hendricks walked towards her in the hall way and she thought "that's it". And she asked him to have a look at Celina and he came straight away upstairs to the children's ward. 

When I brought Celina to bed that night my phone made the sound for what's app message received. When I came back to the room I checked it and it was Dr Hendricks asking me to please call him in the morning. Now I got excited. Had this man already looked at the scans and x-rays?

I called him first thing in the morning. He explained to me that he would want to do something on Celina which is called osteo genesis. He explained everything to me and said he would need a R 3000 from me to make a 3D model on hand of the scan of Celina's jaws and that usually one gets it back from medical aid. They would do the whole procedure on the model first to see what exactly needs to be done and how to reach the perfect result. And see the end result. 

Now my excitement went through the roof. But where in heaven do I get R 3000 from. And since we just have hospital and savings there is very little chance that we would get it back.

Our pediatrician had connected me to an organization who helps children like Celina with appliances they need. I thought this is kind of like an appliance. I send an email to the lady I spoke to already on the phone and explained the situation. A couple of days later she came back to me and said she would pay for it. Wow, this is amazing. God at work.

Next when Celina was back in hospital in May Dr Hendricks secretary gave me a call that he wants to see us. The 3D model was done and everything ready to be explained and shown to us.

Because Clint was off the next day he said we both could come over at 1pm. My excitement got almost to a stage that I couldn't bare it anymore.

The next day we went to our appointment. We saw the 3D model. First of how her jaws look now.
  

This in itself is amazing, that one is able to make a model like that. Now keep in mind that the back teeth(moulders) are closed and the front is by about 1 cm apart.
Now there where the black line is they will cut through the bone on both sides of her mouth but not straight through. They cut diagonal and then a little metal piece that is called distraction tool will be placed over the cut. This thing is bend already in a certain way. 3-5 days after the surgery when the stem cells in that part are being activated they start screwing the distraction tool 1-1.5 mm a day apart. This whole procedure will take about 2 weeks. Where the bone is pulled apart and  a new bone is growing in the gap. After just 2 weeks 2 cm of new bone will have grown in a slight curve.

In the top of the pic one can see the grown bone and how it will look after 2 weeks and bottom is how it is now still.

They say she will just have a bit of swelling on the third day and the Dr said he has a little machine that helps getting the swelling down quicker. Also she is still young and the healing and growing of the bone is probably going faster then with an adult. And obviously she will be kept comfortable with painkillers. 

Dr Vikatos who made the model didn't wanted the money for it and they keeping it back if other costs should come up to cover. Dr Hendricks said he doesn't want us to worry about any costs. Hospital and the surgery and doctors will be covered by medical aid. 

Now the most important and the one to keep the focus on so that one doesn't get too nervous is this: 

The End Result

This is how Celina's mouth is going to look!

If this is not phenomenal and amazing then I don't know anymore. With this the apneoa will be gone. The airways be widened by 2 cm, the tongue will come forward because its attached to the lower jaw, the eating, drinking and swallowing will be much better. She will be able to chew properly and the cherry on top she has a much better chance of starting to speak. Yes I know there might  be pain and there might be swelling but there are means and ways to cope with it and its but for a short time. Looking at the end result and how it will help Celina in the long run to a better quality of life is just the main focus for me. 

The surgery will be about 2 hours and she might have to have a 3 day trachea to make sure her breathing is save.  She has gone worse over the last couple of years and we don't know what would happen in future without this surgery. There is always a potential that she would get worse and one day wouldn't be able to eat or breath anymore and end up with a life long trachea and feeding tube back  in her tummy. 

With this she can make progress. When she can chew and eat properly and use her mouth and tongue properly her mouth will stay in tact. You know how it is when you don't use something, it rusts. If you don't use your legs they get stiff. 

The surgery will be on the 22 June and my great excitement is catching on to a little nervousness as closer as we get to the date. Everything has just fallen into place ever since the pediatrician and myself spoke about this that morning standing at Celina's hospital bed. I firmly believe that there was too much God incidence for it to not be meant to be. 

I will keep sending posts on this blog to keep everybody updated and  also not to be flooded by what's apps while we are in hospital. So please watch out for my posts. 

And most importantly keep praying for us, especially Celina, the doctors, anaesthetists, nurses  and everybody else involved like physios etc. 

Thanks to all who have never stopped praying for us. We really appreciate it. Without prayer we are on our own, with prayer we are surrounded and kept save by our triune God that never leaves us nor forsakes us. And I know He is with us every step of the way. Some of you might remember Celina's hip op the end of December 2012( see the story on this blog starting in 2012). It was a 6 hour surgery. If I look back to it, it was hard work with the spica, both sided cast with a stick in the middle to keep the legs apart. In the end only good memories left and we flew through it. And ever since Celina was free from hip pain. She might have to still go for a hip replacement but that is another story. 

Like always All the Glory and praise and honour and thanks go to our most amazing Almighty God; Father, Son and Holy Spirit. Without You we wouldn't have survived the last 12 years since Celina's accident. And I see my daughter walking and talking like my amazing God has promised me the very week after her accident. And I still believe and will never ever give up on IT.

The liquid food mission

Ok this is just not funny. Because of those eosinophls which have increased and caused havoc in the esophagus we are now in this liquid food drama with Lini. We need to get food into the stomach without irritating the esophagus because that is very painful for Celina.  On top of it, it must be as free as possible of animal proteins because they seem to cause the worst. This is happening by NG-tube which we anyway have but only used for water and maybe Peptamen for a while. Why is the tube still in??? Because the coordination between eating and breathing and swallowing is easier then the drinking and swallowing and breathing which is the cause that we do not get enough fluid into Celina by mouth and need to use the tube.
Now the root of this is another story, which I will tell in my next post and that is the one you should not miss. Its amazing and not possible without God's wonderful creation "The Human Being" and his bodily ability.

Anyway back to this interesting mission. With the liquid food diet we seemed to have won the last 6 weeks long battle or maybe I should say years of battle. Well, Celina is back to normal or at least no spasms anymore yet still a little tired. But there is no time for mommy to be tired.

Last Saturday we were discharged from hospital with a feeding machine, a blender borrowed from the dietitian, a bit of Neocate back up and the mission to make liters of liquid food. Oh ja and not to forget 4 different recipes. Well they all 4 have chicken liver in it. I eat them but am not very keen on frying them. Hey for my Lini I do it all.

I had made one liter still for in hospital because the dietitian wanted to run a trial to see if the consistency is right etc. That first liter wasn't bad.

On Saturday afternoon I wanted to make 3 liters so that I could enjoy the rest of the weekend. I thought if I do a liter of each recipe I would have 3 days off. The first liter was the same I made for hospital already and that went well. Recipe 2 with beetroot was a little too thick. That's not good because that will not go well through the machine. And then there was the homemade coconut milk. Quick and easy with the blender. That should be easy. It was just when I wanted to take the jug off the machine it turned in the wrong place and I had my impressive homemade coconut milk all over the machine and table top. The clean up took me a while since the stuff is very oily. So much for the perfect German.

When I was finally done with liter number 2 it was late and I was just exhausted and not quite sure if I would cope with this.

Well, my Sunday went for liter 3 and 4. Not much better. The stuff got thicker and ticker. No, no, no this isn't fun at all.

Monday I had a break. Well kind of since there is still the washing and my hubby and myself for that matter need also some food. And somehow the liquid feeds need to get into the machine and started. By the way the machine also got its own will. I could just not get the running times right since the food is thicker then the milk. We have single feeds(bolus feeds) during the day and consistent feeds at night for 8 hours at 70 ml/hour. Those night feeds were the worst. Sometimes the machine started beeping already at 5 where it was supposed to go off at 6 or at other times I woke up at 7 and it had just started beeping.
And then there was still the clogging of the machine. The blender must have not properly liquidized the liver and clogged up the pipe. Great the giving set was only 2 days old. I can't afford this. Oh no. I started a new one and the same happened. How am I getting through with the couple of giving sets I have if I go on like this? I started straining all the foods from this batch and then started the next set. Thank the Lord this time it went through. And somehow those sets are build that you can't get the blockage out. So at least did I think. Well, was I wrong. Clint came home and yes I had almost forgotten about my very own McGiver and thrown the second set away too. With patience and skill he saved the giving set. McGiver saved the day and I felt a little better.

Tuesday I did my next batch of 3 liters and I got it done in a days hard work. Falling half dead on my bed at 8pm trying to stay awake to put the machine on for the night feed at 10.

Yet again two recipes were still to thick in spite of changing the recipes a little. I really don't want this. Can't I just stuff some food in the mouth of my child like any other mother??? Do I have a choice? Not really, at least not at this very moment. Is this traumatic? It could be ......without God, definitely.  Am I a person to give up? Naaaaa Germans don't give up they are naturally stubborn, I heard people saying. Well maybe there is a bit to it.

I am getting better by the day. The day feeds are less stressy and I have developed a routine that makes things work better and quicker. The night feeds? Don't even ask.

And then there are 2 little oral feeds. Na that is what I like. Since we have something else coming up I have to keep myself together and not go over board and be nicely patient. Yes I am pointing again to our exciting upcoming event. Yes watch out for my next post.

Today I did my 3rd batch. And yes it is going a bit quicker now and is not taking the whole day anymore. Yet still some of the stuff is too thick. I am  getting there slowly but surely. Give me another week and I WILL get it right. And the kitchen looks every time like a bomb has exploded and smells like chicken liver. I don't know how long I can take the smell. The beetroot calls for special care if one doesn't want to have red splatters all over the show including my own clothes. Maybe I should get myself an apron. Ag ja and then the dietitian came around today. She worked over all the recipes again and changed them a little. Hopefully that will make things easier.

Lini in the meanwhile is well and even laughing sometimes.  Since she is out of hospital she is very peaceful and has no spasms anymore. She is very alert and focused. She follows everything that moves around her. This is really amazing to watch. Celina will also not go back to school this term because it is to risky for her to still catch an infection before that exciting up coming event.

Sorry, no pics of my hard work in the kitchen. Anyway don't know if you would find me inbetween all the dirty dishes.

If it wasn't for God this week would have been so much worse. He carries me. He lifts me up. He loves me. I am His daughter. That's enough to go on forever.

Thank you Lord for your faithfulness. And thank you for a husband that always tries to encourage me.

Time is just running too fast and I can't keep up anymore

Lets do a quick overview from my last post onwards.

We still had our court case but it was postponed by 2 weeks. So it happened in the end of October. The final argument was just the end of November. All in all 4 1/2 days of court and 4 hours witness stand for me. It went all well yet ever since we are waiting for the judgment. That's now just over 6 month.

Just before the case started Celina spent couple of days in hospital. This time in Kingsbury because we have medical aid again and are back in the private sector. Hallelujah, what a difference. Well we had our good times at government hospital too and did some ministering there. Yet this is much better. I made some new friends too.

It was the same story again. Bowels stuffed up, tummy pains and spasms. They did a bowel wash for couple of days and emptied her completely out.  It took me till December to have her have a normal stool again. What a mission. She also was back on NG-tube feeds and ja they are soooo expensive. Somehow God always provides.

We had a great December and thought all was getting better and Celina was back on oral feeds and back to school in January, when suddenly everything started all over again. Bowels stuffed up, tummy pains,spasms and sleepless nights.

In April we were back in hospital. Bowel wash again just to find out every time we do a bowel wash she starts getting seizures. So we had to stop them and do just Movicol with lots of water and it seemed to do its job.
The day we were discharged was all happy. We left the ward and I belted her in the car and got my half a household into the car too and started driving. I had just left the hospital parking and entered the road when Celina started screaming and this the whole way home.

Another 2 weeks went with Celina sleeping next to me and Clint on the couch. We just did not feel save leaving her alone in her room and also I was turning her every hour or so from back to tummy until about 12 or 1pm before she finally fell asleep totally exhausted. On the tummy she is on a wedge which then also meant that I pulled the wedge half the night on and off the bed. I had night gym full on. But that was the only position she was comfortable and calm. Clint needed his sleep because for him is was everyday getting to work.

I was all the time with our paediatrician via email in contact and since the blood test from our last hospital stay stated a rise in eosinophils which are white blood cells that live in the intestines. This can be raised due to worms or eosinophilic esophagitis(EE).
Celina had medication for worms. It didn't make a difference. We started her on some medication for the EE. And decided to leave her for a bit again on just formula feed to give the tummy a break. With each thing we tried it got better for the first two days and then worse again. With EE the eosinophil have increased so much that they have moved into the esophagus and caused inflamation and difficulties to swallow because of excrutiating pain. Celina got worse and worse and nothing really helped besides the laying on the tummy.

On the 11 May the doctor and myself decided it is time to get her back to hospital to once and for all sort this out.  This email thing wasn't working for her and neither for  me. Clint and I also got a little frustrated and Clint needed to spent his nights back in our bed.

On our way to the x-ray department. This was one of many visits.

Daddy and Lini having some cuddle time.

Mommy and Lini also have lots of cuddle times.

 The dietitians were heavily involved and so first of all they put her on a different milk formula which is an elemental one(Neocate) and has amino's and no normal proteins. After only 3 days we had a major difference to the better. Then she was put pack on the Peptamen for a trial just to see her getting worse again immediately. After 2 days she was put back on the Neocate and getting better straight away. Then the dietician started making liquid food with chicken liver, sweet potato, rice milk, homemade coconut milk and olive oil. This also seemed to work well. The issue here seems to be the protein.

I am much better and a happy chappy again.

After almost 3 weeks my first time sitting in my wheely again. 

Now it was time to go home again. This meant feeding machine, Neocate which is ridiculously expensive(just for backup) and liquid foods. My head is spinning already. The dietitians sorted us out with a blender so long. But we need to get our own and give this one back. We also need a more powerful blender with at least 1000W.
Read my liquid food journey in my next post. Coming up in the next couple of days as well as something super exciting. So, please keep checking for new posts. You don't want to miss this. This is just amazing and God had His hand in it Big Time.

Discharged and on our way home.

THANK YOU LORD