It is finished!

On the 28. December was Celina's 12th Birthday and we had a little celebration with some friends and family. I really enjoyed making Celina's cake especially the butterflies. Unfortunately she was not able to eat it or even taste it. She was spoiled with presents and love.

Proud parents

 

After that, finally a break for mommy from cooking and baking. We had some relaxing days just chilling.

Celina showing off her new outfits and back in her standing frame and on her tummy. We are going slowly somewhere.

Standing phew finally and loving it.

Doing a little weight lifting hehehe just kidding, just holding on to it.

Daddy takes us out to the Spur for breakfast. Well like always I got my own food                                                                                                                   

 



 

 

Also just received an approval for physio and occupational therapy from the medical aid for the first 3 month of 2014. Thank you Lord. Both twice a week. Wow amazing.

 

 

The year is finish and once again we give all the glory to God. We leaving a tough year behind us and starting a wonderful new one with lots of blessings. Blessings to receive and to give.

 

Thank You Lord for being always with us! 

 

 



Ending the year off with great surprises

Wow another month almost gone and the year almost done and over with. Well we are looking forward to a much better 2014. We can definitely say that the year 2013 was a tough one which ended off with a bang. After a lot of struggle Clint's salary came finally through on the 24. Dec.
Ja gave us really soooooo much time to buy still Christmas gifts....hahaha. But anyway we got it all done had a fantastic Christmas Eve(German style) with lots of wonderful food and a very tired Celina.

Ending off the evening with a little surprise I made and really enjoyed making it with my new tools.

Then on Christmas day we packed all the leftovers and went with the whole family to Kirstenbosch Gardens. I had a brilliant idea and we had to stop at PnP to buy Celina one of those lilos which are like a chair but you can also unfold them and lay on it. Perfect! Takes a lot of stress of my back and Celina sits comfortable too. Big outdoor help! Check it out.

cool and comfy on her new lilo chair

mommy also gets to lie on a peace and relax

Lini and Daddy looking sooooooo cool.

This chair was really a very good investment.Works like a charm and has just the right size for her. The summer is saved.

Otherwise we can't complain. Lini had a good month. Eating went well. And then yesterday I thought that it really starts working on my nerves that her mouth is still full of food after eating because Celina can't clean it properly. So I just took one of her bottles she used to drink from and gave her couple of sips of water and voila there the mouth was clean and no coughing or choking. Great. Something new, another step forward. Thank you Lord.

 

I also got her a swim suit so that we can start going in the pool from January onwards. Oh yes I do not think I mentioned this already. I found a aqua therapist in December and we met her and had an assessment done. Then we send in a motivation for aqua therapy and are now waiting for approval from the med aid. But I am sure we will get it. Because God is good. And the next year will be fantastic.

 

Last week Celina had a very tight neck and shoulders and I first did not know what was hurting her. Thought already the hips but no that wasn't it. Checking a little more I got to the point it was the neck and the shoulders which then was confirmed by the physio a day later. I had already given her a bit of a massage and the physio sorted the rest out. She is much better and has no pain anymore.

Once again thank you Lord for guiding me and putting the right people on our path.

 

Then the biggest surprise was still to come. We did two small fundraisers this month and they seem to not want to take of in the beginning. Then a week before Christmas things started happening. Celina's account started filling in the most amazing ways. But then on Christmas Eve with the whole family around us I received a sms notification from Celina's account with a big sum having arrived on her account. Later we found out it was a friend of Clint who did not know about our fundraisers but had a dream and her own ideas. I think one can safely say she did her own fundraiser and collected money from all around the world to bless us with. We were amazed and my goose bumps were sky high and the tears started pooling in my eyes. Wow what an amazing God we serve.

 

Next year is off to a good start and I am starting to look for a new wheelchair/pram which is really needed. The old one is 7 years old and Celina has outgrown it. She is not in a good position in it too.

 

Thank you to all the wonderful people who have given to help with Celina's costs and to all who keep us in their prayers and to all who have helped with the fundraising.  You are all amazing and blessed.

We love you all. Without all the people who have been by our side through this last 9 1/2 years since Celina's accident we could not have made it.

 

Yet all praise goes to our wonderful Lord Jesus who has never left us, carried us, guided and lead us and others and loved us with the love no earthly being can. Thank You Lord.    

What's new?

Well not much is new besides that last Monday we went with the school to the aquarium. That was absolutely amazing. Celina enjoyed looking at a hundred or so Nimo's and some Dori's and obviously there were also Bruce and friends and some other friends from the movie. All the children enjoyed themselves including carers and mommy's.

Then on Wednesday it was back to hospital for one day for some Botox in Celina's arms. I do not want to go into detail but it ended, actually started already at admission with drama. Well, the Botox went well everything else didn't and by 6pm we were finally discharged. With us nothing seems to go straight forward.
Anyway that's done too and hopefully we can finish this last bit of the year in peace and relaxed.
Two more school days and its holidays. 6 weeks at home. No rush in the morning. The only thing is that then I have to take Celina with me where ever I need to go. Well, for short shopping trips I can probably quickly get out when one of the therapist is there.

Here at home it seems like the holidays have started already. Check out those 3. They think they are on the Bahamas.

Miss Happy Chappy

Lini is laughing again and having a good time with Daddy and Tigger. We are going forward. Still with NG tube but eating orally too. And next week we are going down one bottle of milk feed.

Thank You Lord. One step at a time and only forward. Looking forward to a great 2014 with lots of progress and big steps forward. Our Lord on our side, hey nothing can go wrong. And we believe it will be a great year. Because our Lord is our Provider, our Healer and our Protector and He never leaves us nor forsakes us.

THANK YOU LORD! 

Going forward slowly

Another week gone. Feeding is going well so far. Stools going well so far. School going well too.
I had an appointment with Celina's dietitian this morning to make plans for Celina's diet for the next 2 month. It is half solids half formula. 3 weeks something new every week and then a month break till January. Just getting in peace over Christmas. Taking no risks.
She had so far only veggies: butternut, sweet potato, squash, Avo, and carrots.
This week we are starting with an egg a day. The portions are still small. And a little coconut oil.
Next week we are going to start some green veggies: broccoli and spinach.
The third week we will bring in peanut butter. And a little less formula and a little more water.
And that's it till January. Then we will meet again to see how Celina is doing and how we go on.

I will need to buy about 3.5 kg of veggies a week and 7 eggs.
This is adding up at the end of the day and including the supplements coming to a lot of money. If you look to your right next to this message I have put Celina's donation account details for those who would like to help with a little donation. And below this is a list of foods we are needing at the moment for those who would like to help us with some veggies or what else is in the list.
I will update the list every week with the new stuff we are trying or actually a week before we start it so that we have it by the time we need it.

This is a long road to go for us and an expensive one too. Every help is appreciated and is taking pressure of us. We have received approval for the next 6 month for the Peptamen Junior formula from the medical aid. Hallelujah our Lord is good. One challenge less. Really a relieve since the stuff cost about R3500 a month. And our funds for medication with the medical aid is finish too. So we need to buy all ourselves until the end of the year. And alone the Movicol for her stools to stay soft is about a R 400 a month. Not even to think of all the other stuff she needs. Supplements etc.

In the meanwhile Celina is doing well. She has a little eye infection that just moved from the left eye to the right. One eye at a time. I also started getting her back into the standing frame for short times of about 20 minutes. Going great. She enjoys school very much and I my free mornings.

Big thanks to all who stood by our side in this last 10 weeks, 7 of which were spent in hospital.

But all Glory goes to God, who never left us and will never leave us. His presents was felt so closely at times. Thank You Lord for carrying us.

Slowly back to normal

Wow the time is flying so fast I can't believe it. Now we are home already again for 1 1/2 weeks. Celina is progressing nicely and she is back on a little solid food and I could decrease the expensive milk feeds slightly. The doctor and myself are still not agreeing and that makes the situation not exactly easier. I am seriously considering about changing the doctor because I do not think I can go on like this. I looked through all my lists I am doing of the meds and stools Celina is having from the last year and I found that she  has had reacuring loaded bowels, constant problems with constipation but with soft stool. Yes I know it sounds a little weired. To me it sound like there is something hindering the stool from coming out as soon as it gets thicker.
All tests done in hospital concerning swallowing and aspiration had been done while Celina was extremely traumatised and exhausted and half asleep. What does one expect under those kind of circumstances?

And the doctor is still on my case about the PEG and the Nissan procedure. This is totally out of question and not proven at all that Celina is or will be not able now or in future to eat. By the way she is chewing and swallowing beautiful. I took her off the reflux meds and there is no sign of reflux at all. I am watching her bowel movement very closely and we will see what happens while going very slowly up with the solid feeds because that is the only challenge we had all along.

For now she is a happy chappy and well. Our biggest challenge  is still the expensive milk feeds. Hey but our God is amazing and great. He is our provider and has and will never leave us alone or forsake us.
Celina has started school today again too. So ...... we are going forward a step at a time. And at the moment I am hearing a beautiful little girl bursting out into laughter. In actual fact she had a great day so far with lots of smiling and laughing.
with Daddy at church yesterday.

Our Lord is with us. He is our Provider because He was rich,yet for my sake He became poor that through His poverty I might become rich(2 Cor 8:9) and He is my Shepherd and I shall not lack(Psalm 23:1). And by His stripes Celina was and is healed. Thank You Lord! We praise you Lord! 

Bad month behind but back home now

Wow another month gone by. We have been in hospital until the 1.Nov. It was a harsh month. Up and down. Every couple of days and always when I started feeding Celina orally again, she had a really bad night with spasms, seizures, cramps and pains and lots of  crying ans screaming. The worst was that no medication would help not even sedatives. The last week we started feeding only tube feeds and that was OK. So on the 1. November we were discharged and were straight away of to Uncle Bertie and Auntie Mish's wedding with Celina as the ring barer.

The weekend went well. I started on Saturday with a little butternut and increased every day a little.
It seemed to work. Then on Tuesday she started a temperature again and the first medication didn't do a thing and the second one needed 3 hours to get the temperature down. Her tummy felt rock hard and she had pain just touching it. Then suddenly she passed a flood of urine. Why is the bladder now playing up again? Anyway the night was OK. Then today she had some sweet potato. During the day she showed some discomfort here and there. The tummy feels quite full and I am playing with the thought to give her an enema.
On the other hand I spent most of the day to find out where to get her formula feed and how much it is and to make ways to pay for it because I am running out of formula on Friday and haven't found a way to purchase more. No answer yet from the medical aid if they would pay for it. I can just trust the Lord that something comes up by Friday. And the stuff is so expensive. We are coming on about
R 4000 a month.
Well, God will make a way, where there seems to be no way.
Otherwise we are very happy to be back home and enjoying the finally arrived spring sun. And Lini is doing well otherwise and laughing again.

I love laying on my  tummy.



Thank you Lord that we are back home and better. Thank you for guiding us through this and never leaving us.

What a recovery

On Monday morning we did another chest x-ray. Otherwise the day went well. Celina sounded muuuuch better. The tube feeds went well and she was far more awake. We also saw some beautiful smiles. When the doctor came in the afternoon she showed me the chest x-ray and amazingly the lungs are fine again and almost completely clear again. Wow, thank you Lord. At 12 midnight they pulled the catheter and on Tuesday(today) she peed fine again. Thank you Lord.
In the evening Celina was off the oxygen and off the monitor. All that is left now is the feeding tube and the drip. The drip is going to stay probably until we are finish with the antibiotics and that should be tomorrow.
The pH study results came this morning and they did not look too good. The reflux is not really that bad but there seem to be some places in the oesophagus where the food is not transported properly.
So, on Friday she is going into theater ......No not for the PEG...... they are going to do a scope of the oesophagus, stomach and bowels to check every millimeter and check for obstructions.
Something just seems not to be all alright with all the urine, stool, throat, nose and eating problems Celina had. And it just seems that it is happening just too fast to put it down to muscle weakness.
This morning I prayed and just spoke to God and asked him to talk to me. I stood on His word and spiritually took Celina and placed her on victory ground. For Jesus has won the victory for us on the cross and I stand on that truth.
We had a wonderful day with Celina laughing and smiling the whole day and she even had a couple of spoons of oral food.
Lord we give you all the glory for using the doctors and nurses and just everybody around us and all the prayers around the world for Celina's wonderful recovery.

 

You are the Alpha and Omega the Beginning and the End. You have the last word and you are Healer and Provider and Protector, Saviour and our best Friend. Thank you that you love us so much that you even gave your live to save us.

  

Turn to the worst

Wednesday we had a meeting with the doctor and he said Celina would need a Nisan procedure to stop her from refluxing and preferably put in a PEG. I said I would be willing to do the Nisan but no PEG. And I am convinced that I will be able to feed her again. He gave us 5 days time to get her on full oral feeds. If that would happen then he would send us home on Monday with an NG tube just for the liquids. If not she would have to have the Nisan.
He also told us that he was on his way out on holiday for 10 days and ask me which doctor I wanted to look after Celina. I chose the doctor I always choose in these situations.
I started feeding her and the first feed started off not so well and I felt like giving up. I pulled myself together and went on very gently. It went OK. Then from meal to meal it got a bit better. On Thursday a pH cable was inserted through her nose into her stomach to study how much reflux she has. The first try to put the cable in ended in Celina coughing profusely and not stopping until it was pulled out again with the comment that it went down in the wrong place. The second try went well.
In the evening she suddenly started a temperature and was given meds for it. At 2 am she still had a temperature and was given more meds. The temperature was down in the morning but again she hadn't had a wee in 26 hours and her breathing was bad. When the doctor came she put a catheter in and drew out the urine with a syringe to see how much was in the bladder. 320 ml. Quite a bit for a little girl but the breathing got a little better. Now a row of tests were on the plan for the day. Blood tests, urine tests, an ultrasound of the organs and a chest x-ray. By lunchtime we were through with everything. The ultrasound showed that she had some stuff floating around in her bladder which stopped the urine from coming out. Now we were waiting for the doctor to tell us what would happen from here. In the meanwhile a catheter was inserted to relieve the pressure on Celina's bladder. In the afternoon I saw some whitish gel like thick stuff in the tube of the catheter. I ask the sister to catch the stuff with the container to send it in because I was sure that was the stuff floating in Celina's bladder. We had to find out what it was.
Then when the doctor came late afternoon we went through the pics of the ultrasound of the bladder and then to the x-ray of the lungs and I wasn't prepared for what came now. The right lower lobe had collapsed and she had a pneumonia. The doctor said probably aspiration. I said how is that possible she ate fine and didn't even cough. She ask me about the tube and that was the moment when I remembered about the cable that was inserted into the lungs instead of the stomach at first. And now I got really upset.
Celina was put on a strong antibiotic on intravenous panado for the temperature because by now it had gone up to over 39 C and on intravenous liquid. For the weekend a locum was on I didn't know and I felt a bit uncomfortable with it. But our doctor said I mustn't worry she will pop in on Saturday. What a relieve.
Saturday morning Celina sounded so bad, like she could barely breath and was just sleeping not waking up eyes half open. The locum doctor first ask me questions and then checked on Celina. He wasn't happy at all. He took her off the Valium for 24 hours to get a better picture of her consciousness. He started her on tube feed because he said she needs the nutrition. He ask the sister to put up a sets monitor for continuous readings. He looked quite worried and also got on  the phone with our doctor.
He stayed quite a long time and watched Celina. Later in the afternoon our doctor came checked the situation and instructed the sister to give Celina an adrenaline neb and another neb for the lungs. After this her breathing was a little better. Later the locum doctor came in again to check on our little girl. I was at peace. The doctors worked as a fantastic team. The physio did a wonderful job getting rid of a lot of phlegm.
Sunday was very quiet. Celina sounded a lot better and was for a short moment awake in the morning. After the first chest physio at 7 am she went back to sleep. Both doctors came in to check on her. Celina slept the whole day and had two more chest physio sessions and also a bit of neuro physio to stretch her. She sounded much better. Celina also had regular stools over the last 2-3 days. Everything seems to get better. To end the day the locum doctor came in at 10 pm to check a last time on Celina. He had done a great job and I thanked him. Both doctor did a great job and I am very thankful for our doctor popping in on her off weekend.

Sleeping breathing much better. Our angel.

What a weekend. But God was present in the room, in us, in Celina, in the doctors and in everybody who looked after Celina.

Thank You Lord you are just amazing.

  

What a day

The day did not start very good. The nasal gastric tube needed to come out before the barium swallow. When they pulled it out it got stuck on the last piece and didn't move. Celina started screaming the nurse called for the sister. Celina's colour changed slightly. Then the sister came put on cloves as quick as she could and pulled but it seemed to be stuck. Celina screamed even more and then with one big pull the tube came out with a big knot at the end. The whole tube had curled up and build a knot. It was almost unexplainable how this could have happened. I have never seen something like that and believe me Celina had quiet some nasal gastric tubes in already. Her nose was bleeding  extremely but more backward to the throat. Looking into her mouth everything was full of blood. Fortunately the physio was still there and straight away suctioned her. Quite a bit of blood was suctioned Celina still crying. What must this child still go through.
Then we had to go to have a barium swallow done. She was still traumatised and not exactly willing to drink the stuff they needed her to drink. So, it was difficult and I do not believe that under these circumstances it gives us a proper result.
Then the OT came to watch her eating which also didn't go well. Celina did not want to eat was very sleepy. And the food was again ridiculous. Now Celina got her own chef who is chosen to be the person and the only person to do her food. Wow.
Anyways after all this the ENT came to have a look again and brought a special tube to look into her nose and throat a little deeper. And he said he can't see much because everything is full of phlegm but more in the throat. Since the Sinus CT scan is clear and the lung x-ray from yesterday was clear the stuff must come up from the stomach. Which points to reflux which was confirmed by the barium swallow. Now the point is why is she suddenly having reflux???  And by now she hadn't had a wee in 24 hours and the blood test they took this morning showed that she was a little dehydrated. But 24 hours not having a wee while having had water every four hours besides at night is going a bit too far. And the stool story is also not working too good. Is that stuff pushing up because it is not getting down????? Questions questions questions!!!!
The doctor is already talking about putting the PEG back in and I am definitely not impressed and don't even want to think about it.

God is bigger then this. He is Celina's healer and her physician with the last report. Thank you Lord.  

Putting on the thinking cap

It's Monday and we are not happy. Well we are but just not about that nothing is changing with Celina. Thought we might go home today but she still sounds the same no difference. Our dear doctor put on his thinking cap and we are trying to check all possibilities and trying to find a specialist or somebody who is working with CP children and maybe knows more what is happening with our little angel. We really don't want to get to the point where they leaving us with just the choice of a peg(feeding tube) in the tummy. So........... we need to find out what is wrong.We did another x-ray this morning and might do more tests. Took some medication off and took her extra Valium she is on off too which leaves her with the normal evening dose. She is still sleeping far too much during the day and her breathing looks at times also quite strange.
We need a breakthrough and get back to normal life.

We stay praying and praising the Lord for the wonderful plans He has for us. And we will praise the Lord until the devil flees in Jesus Name because this sickness is not from God yet the solution and healing is.

All praise to our great big God.

Still in hospital

It's almost 2 weeks. The spasms are gone although we still had this week 2 nights of them. But not that bad.

This was the only position that Celina would stop spasming so I set with her like this until she was in deep sleep and I could get her back on her bed.

Nights are good now and the days too. Just that Celina still sounds like a tractor from the nose. The lungs are fine. I still have feeding problems. She is not eating enough and the drinking is slowly getting better. We are done with tube feeding although that seemed to have been very interesting for her.

Very interesting how I eat. Mmmmmmh.

 



 And then the whole trouble with the hospital kitchen every day because the food was full of pieces. Celina couldn't eat it like that. I talked almost every day to them but nothing seemed to change. Then another manager from the kitchen came to see me. And that was the best thing that could have happened. We agreed on how the food had to be and since then the food is pureed to perfection. And I discovered that they had strawberries and fresh pawpaw, which they now also puree for Celina.
Then this morning we had a little surprise. Wow. Celina got a beautiful doll from the kitchen staff. I was so amazed and overwhelmed.

I love my doll. Must just give her still a name.

Hoping now to go home soon. We are sick and tired of hospital. We had more than enough for this year. Need a break and some good time.

 

Anyway we still thank the Lord for being with us through all of this and strengthening us. He is our help in times of trouble. We praise you Lord always!



It just doesn't stop

September started actually very nice. Celina was well but still a lot at home due to the cold weather and our car not driving. The mornings were very cold still. If it was a little warmer I packed her in very warm and walked her to school. And she has fun. I walked back home and then at lunchtime back to fetch her and we would be brought back home by the Chaeli bus.

 



Then on the 15. Sep Celina started spasming in the afternoon but we still went to a church service. What followed was a total sleepless night trying to have her over our legs on her tummy which was the only place she would stop. In the morning at about 4 I put her on the tummy between Clint and myself over a little rolled up pillow and she fell asleep and we all could still get 2 or 3 hours sleep peacefully. Then she still had OT at 10.30 and after that she started crying. I tried the tummy thing and it first still worked but then later in the afternoon nothing would work anymore and she started spasming again and after a while she also started sweating badly. Her hair was already completely wet and I could not even wipe the sweat out of her face as fast as it was coming. Soooooooo............

at about 8.30 pm we were at hospital children's high care. She had some Dormicum to get her sleep and her dose of Valium was upped to 3 tablets. Drip in for some extra fluid because she was sweating so badly and a nasal gastric tube in and bloods taken.

 

Tuesday we had some results and also a sinus CT scan done but everything was negative. Beautiful clear sinuses, bacterial panel clear, viral panel clear. She wasn't eating or drinking. She had the liquids via drip and tube food was started on Wednesday. Tuesday night I layed hands and prayed for her and from one second to the next she stopped spasming and never started again.

Friday we still did a Helico bacter( stomach ulcer) test and tried different treatment for the nose out. It still doesn't sound right. And one dose of Valium was taken off too because she is sleeping too much and I can't start feeding her.

Also on Friday chest physio and OT at the same time.

Lots of hard working hands.

 

Saturday: Blood test for Helico Bacter is negative but the stool one hasn't yet come through. We took the time and gave Celina a good hair wash and bed bath. She looked so beautiful.

 

I had my beauti spa and food again and feeling much better!

 



Thank You Lord for the quick recovery and all the hands involved doing such a wonderful job.

May they all be blessed abundantly.



 



Relaxing

The weather was bad, it was cold and rainy and stormy so we just stayed at home. It is still too cold to bring Celina to school. We had all the therapies at home and it went very well. This week Celina was laughing a lot appropriate. We had lots of fun. Then Candice our physio had her on her feet this week just with leg and foot splints. Celina looked so comfortable. We now have to get a bit of height under the right foot on her foot splints because this leg is a little shorter then the left. Once that is done we can start walking her. That works as follows. She will be standing with her leg and foot splints hold by someone and then the one holding her stands behind her and starts pushing with there feet her feet forward into walking. In this way she will get a bit of feeling what it feels like to walk and the last time about 20 month ago when we did this she lifted her right leg a bit into a step.

Look at me, I am standing. And I am loving it.

 

 

Thank You Lord for progress!

House bound

Celina is out of hospital but has strict orders from the doctor to stay home in this cold and wet weather. Her lungs are not yet back to 100%. So...heater on and covered in blankets some lovely nutritious food and supplements. Building up the immune system and getting strong. And mostly hoping that spring is coming soon and warmer weather. Most probably still staying home the next week and then hopefully starting school again the following week.
The good thing is that Celina is laughing for the last 3 or 4 days constantly and none stop. Wanted to put a little video here but can't get it compressed and otherwise it is too big.
Staying indoors means lots of time for stretching and exercises and a movie or two.
And for ........LAUGHING.

Thank You Lord that our little girl is back home and much much better.

Getting better

Celina is getting better slowly just that we had another choking accident because of not proper pureed food this morning. It's so frustrating. The one shift does Celina's food so perfect and the other one just doesn't get it right.
I am almost back to normal just a slight cough left. And anyway in this weather it was nice just to stay in bed and go nowhere, even in hospital.
Thanks to those who have given so far. The first month is covered with everything that Celina needs.
And there is still some for the following month. And some products are anyway for 3 month that's covered.
And then last night she was in a really good mood laughing a lot being on her tummy. Looking so big already.

Do you see the pic on the left side of the photo, on the wall? The house. Celina did that with her occupational therapist choosing the colours and shapes with her eyes. She does this very well already. It's amazing to watch.

This morning she got this big new friend given by a visitor of another patient who saw her yesterday. Just a loved child by so many. She leaves an impression on so many people not saying a word. Just amazing.

 

Thank You Lord for our wonderful little angel, our beautiful girl!

Funds needed

Hi all

 

Celina is once again in hospital with a lung infection. She is in highcare on oxygen and nebulizers. This is the fourth time in 8 month that she has a lung infection. We really need to do something to sort this challenge out so that her lungs will not end up damaged. And we had an appointment with our new dietician who is really amazing and known worldwide. Helping us in many different ways to sort Celina's health problems out. Like it always is, good stuff cost good money and is needed for many month if not years. And the medical aid is paying for some of the products but not all. The costs will be about R1000 a month for us which we are really not able to cover.

So, very simple and straight forward, we are looking for people who can help with a donation once off or monthly.

If you received this e-mail and do not know Celina's story please go to godneverleft.blogspot.com

The very first page(2012 the oldest one) gives you the main story and thereafter you will find what happend throughout the last years. Have a look and find out more about our little angel. She really deserves a break after all the suffering she went through especially in the last 3 years. These supplements will make a big difference to her immune system, digestive system and generally building up her strength.

 

If you feel led to help us you can make your contribution on Celina's account

 

Celina Aspeling

Absa Bank

Accountnumber 9173922627

Bankcode 632005

Swift code ZAJJ

 

There are one or two things which are very urgent and need to be started immidiately.

 

Think about it, pray about it and don't feel bad if you can't help or don't feel led to help. We trust the Lord that enough will come in to cover all these costs.

All our love and be blessed

Clint, Manuela and Celina

Back again in hospital

Celina started getting temps already last week Tuesday but I just undressed her and the temperature went. And then for the rest of the week up and down. One day better one day worse. And then Tuesday the oxygen went down again which means hospital. And that's where we are since Tuesday. Before I admitted her I still went to our long awaited appointment with our new dietitian. And it was great. We starting her on some new supplement and exchanged some of her old stuff for better ones.
All in all it looks very promising.
The blood tests showed on the one hand that a lot of her mineral results were a bit low. And for the lung part they found para influenza 1, 2 and 3. Again we do not go the simple way and have a virus nooooooooooo, we take three and on top of it mommy placed herself with some flu symptoms right next to Celina.

Two sleepy noses. Lini with triple flu and mommy must have caught some of it.

 

Looks like it might be a weekend in hospital. Well, at least we got around the terrible weather.

 

And I just saw on my overview that yesterday 45 people and today 95 people looked at this blog. Hey all of you thanks for your interest in our daughters story and progress.

 

We might look sick but we are healed by Jesus' stripes(1 Peter 2:24). Thank You Lord. We are on victory ground.

 

                                                        Thank You Lord!

New Journey

We are about to start a new journey with Celina. Because of the whole pooh story from the last weeks our pediatrician has referred us to a different dietitian. Like I am, I googled her and was fascinated by what I found and am now very excited and looking forward to next Tuesday to see with what ideas and solutions she is going to come up with. And how that is with new journeys they cost money. So I am thinking that I will go next week after our appointment and when we have calculated what this new journey is going to cost out on a fund raise spree. So keep on watching this spot to hear what is happening.
At the moment our little angel is not in the best place. She had a temperature just on Tuesday and Wednesday early evening and it wasn't very high, just above 37 C. No reason to stuff her up with meds, just get the clothe and blanket of and let her cool down. An hour or so and the temperature was down again. During the day she was fine just very sleepy. Then today again very sleepy but suddenly every move seemed to be sore. And the first evening with the temperature her cheeks and ears were fire red and hot which is also gone now again. Have no idea what this is. Just hoping she is soon better and just loving her. Stools are regular again, well at least kind of. After having one every day for 4 days or so we again had a gap of 3 days but today before she went to sleep she unloaded and then went straight to sleep. Before we could even pray with her she was gone. Looking like sleeping Beauty. Our gorgeous girl. Getting so big, so tall, so heavy. Aaaaaaaaand starting to grow boobies.
Ok that looks like we slowly going over into teenage hood, puberty. Oh my, always something new.
Now this is different. Seeing your child growing into a woman. Wow I must really get used to this one. Why must everything go so fast?...................wasn't she just born yesterday or so? It is just amazing how fast the time goes.

Well like I said look out for next week. I am sure it is going to get very interesting. And this dietitian we are going to is internationally known and specialized on special needs children. Why did we not hear about her earlier? I mean really we are in this for 9 years now.

9 years, oh yes by the way like every year I forget the date when it happened and then shortly afterwards I remember that another year is gone. On the 27. July Celina's accident was 9 years ago. I can't believe how the time ran away. Well and we are still standing and still going, have never given up and still believe that the day is on its way when she will walk and talk again. Yes call us crazy and yes we are crazy. Crazy for Jesus and His promises. Without Him we would have not gotten through all these years like we have. Yes we had our ups and downs but still strong and full of joy for the Lord. Hey and most importantly still happily married. Try and get that right. Not easy I can tell you that and without the Lord we might not have made it. But with Him all things are possible.

Thank You Lord for walking all these years with us, for being in it with us, being by our side, carrying us at times, reminding us of your goodness and lifting us up and protecting us and providing for us.

 THANK YOU LORD!!!

Hospital once again

The pooh story on its highest point. Celina started this week to get little seizures and is sometimes not herself anymore so I decided to sort this out once and for all. No laxative seems to really solve the problem and Celina gets more and more blocked up. The doctor admitted her to hospital to sort this problem out. First we had an x-ray done which showed that she was stuffed up to the top and had also a quite big amount of air on one spot. We tried the first day with more laxatives and had no stool. Today she got a nasal gastric tube and they are giving her 100ml of water every hour . Now we sit and wait. Another thing which is happening at this very moment is that the physio is taping her on her tummy. These stripes of special tape are supposingly also helping. Lets see. And they are a nice bright pink. Looks really funky.  Well Lini is not even feeling uncomfortable and watching movies.

 

 

wowwwww nice movie. And I am feeling great. No problem. Last night I kept the ward awake with my laughter.

God is soooooo good. We trust in Him because He is the only one who will never leave nor forsake us and will always love us like no one else can. Thank You Lord!

Going forward

By Wednesday we will be off the morning Valium and just left with 5 mg at night. Aaaaaaand it goes well. We have a slight tightness in the arms and some seizures. They said so at school, I haven't seen any at home. And today even the arms were already much looser again. Unfortunately the pooh story doesn't seem to find an end. She is just not having a stool by herself. Very strange if that doesn't change soon we have to go and get this checked out.
And with the Valium we are going to take a break from the weaning after Wednesday and just watch her. Then in 1-2 month we are going to go on and hopefully latest by January she will be completely off again. The first tablet went very well. And I believe the second will go off great too with no problems.
She is still laughing a lot and the laughter gets so giggly, sometimes its like one is almost waiting for her to say something or just get up. It sounds so normal. Today she burped, looked at me and burst out laughing. Is that not normal child behaviour????? I think so. She is also still standing every day in her standing frame and I started some little grab exercises with her hands and I can feel her grabbing my thumb. It is better on the left hand then the right but anyway I was quite surprised when I did it the first time with her. How exiting!!!!!!

Up the head and looking around and being the happiest child ever ... and no smutched eye.

 

 

Thank You Lord for small miracles AND the BIG ones too. 

If it is not the one thing it is the other

The last month was fairly quiet. Celina is on holiday. 2 of her classmates ended up in hospital with pneumonia and then in the end Celina too. But we were only 2 days in hospital. I reacted very fast this time and caught it super early. We got a nebulizer from a friend and so could do everything Celina needed at home. Celina is very loose and ja I am doing it again I am busy weaning her off the Valium. I now really got a lot of experience with it and we are going very slowly. Every 8 days a 1/4 tablet down. The first 1/2 is gone already and our girl is doing well. Still loose and happy. Now one thinks one can still have a bit of holidays and just relax. Ja .....right.

And with going down with the Valium we now really don't need to run into any dramas. Well like that is with us there must be always something. Celina had for 8 days no stool but shows no signs of discomfort is happy and laughing. There is no sign of constipation, her stool is soft but just don't want to come out. I am running out of ideas and the doctor just put her on a laxative. I don't know if that is helping besides making the stool even softer then it already is. And that is going to be a big mess once the stuff is coming out.
Sorry this is really a poohy story. But that is what our life looks like at times.

Otherwise our little darling is gaining more and more head control especially when she is laying on her tummy where she now lifts up her head and starts looking around in all directions. And I sit and watch this in amazement. It is just amazing that from just laying there on the tummy and not even lifting the head at all but rather pressing one eye into the towel or her hand and ending up with a smutched eye .....to lifting it up and looking around with perfect neck and head movement, looking at her surroundings. Thank You Lord. And her legs are by now so loose that one can just move them around to every direction and even roll our little girl all over the bed backwards and forward.
Now really does that sound like just from a surgery. I don't think so. I believe God has His hand in there big time. And we are going to see far more. Just watch this space.

Sorry no photo today. Our computer needs some sorting and I can't load photos at the moment. But I promise there will be soon some again.

Thank You Lord for Celina's progress past, present and future.

A GLORIOUS weekend

Wow, what a weekend. We have already been last weekend Saturday in Kraaifontein at a meeting with Todd Bentley's healing revival service. How amazing. On our way home Celina moved her legs the whole way home.
Since then she is also very alert and laughing a lot. Then last Friday we went again. We saw a blind woman receiving her eye sight and some deaf people could hear perfectly again and cancer, arthritis and many other sicknesses healed.
On Saturday we went once again. A lady at the meeting had blessed us with petrol money to be able to come back. This night they had prayer lines and Celina was in it. After Todd prayed for her he stepped back and looked at Celina and her face looked so amazing. He said that Celina knows the Holy Spirit. And he gave us some testimonies of other children with a similar condition who were healed some of them not immediately. The one took 8 month to recover completely.
During the service some people broke out into Holy Spirit laughter. When they finally stopped and Todd started teaching Celina burst out laughing for a while.
She is much more loose now in her legs and generally, still bursts out into laughter some now and again. And when I put her on the tummy today she lifted up her head for quite a while and started laughing again.

head up and laughing and looking in the mirror in front of her

Down again and still laughing

 

All that in one weekend. We are believing for complete healing. Who is going to hear the first word and who is going to see the first step. I am so exited. God is good has always been and will always be.

 

Thank You Lord for an amazing weekend, for boosting our faith and for loving us. Thank You for the leg movements, the laughter and the lifting up of her head. Thank You for giving Celina strength to do all those things. And mostly thank You for her complete healing which has started now and will not end until she is back to complete restoration of her whole body.

We praise You and we worship You our Lord and our King!

  

A long Month

Wow this May seemed to have just no end. On the 6.May Celina got out of hospital all healthy and happy again. We spent the last Saturday and Sunday in hospital racing Celina in her standingframe through the long hospital hallways and had such fun. I should have had somebody running with us and filming it.
Since we are back home she is standing every single day and is very happy with it. No problems at all besides maybe the cold weather.

First we tried some warmer clothe Ok that is better but still cold

now that is nice and warm ...blanket wrapped around...yepee....and a warm drink

And now it is really getting too cold and we started putting on the heater. And then it works also without the blanket.
For afterwards I got a little friend to help keep me keep warm.

mommy?......Moooommmm help he is getting a bit heavy on my legs..... warm but heavy

alright that is better. He seems to really like me and he is warm and cuddly

But must he really kiss me???? Urg that is wet and cold.



The time goes slow but steady. The weather is getting worse and worse. Cape Town winter ....stormy and wet. I hate winter. It means not a lot of walks and a lot of time inside. Celina is having lots of position changes and animal therapy. Tigger is a lot around her and she likes to look at our fishies. From Monday to Thursday is school getting there in wind and weather and then on Fridays Mommy helps at the craftworkshop at the Chaeli Campaign which is lots of fun. Sometimes when Ma doesn't have the time to look after Celina I take her with me. She can either watch the others do their craft projects or if I have the time I do a little project with her. But normally she spents the Friday morning with Ma and she is getting a nice bath with hairwash and all by our wonderful nurse Eldah from the Westlake  homebased care. And then there are still all the therapies. Most of them are done at school but on Friday afternoon Celina has her second Occupational therapy session for the week and this one is with Ingrid. Ingrid is doing a lot of play with Celina and a lot of communication via flash cards. This works very well already and Celina gives her answers by looking at the appropriate card. Dolly is a big part of the session too. We are seeing some seizures at the moment but I am quite sure that is
 coming from a very irregular stool which is slowly becoming regular again and the seizures getting out of the picture too. This constipation is often due to the medication Celina had in hospital or when we had to stop the supplements because of financial challenges. But now everything is back on track.

Thank you Ingrid for the wonderful work you are doing with Celina. Celina is combing Dollys hair.

 

Thank you Lord for all the wonderful helpers and therapist you placed in our lifes.

 

 

Still in hospital

Now it is Wednesday already and we are still in hospital. Celina is much better although we had a little bit of a problem with her lunch today. It wasn't properly pureed and there was a lot of pieces in. Dangerous pieces and Celina started choking and was coughing for a while. After that she sounded again like a tractor. The nurse put on a neb immediately to help open the airways. It helped a little and then later the physio did the rest. Chest physio and suction. Celina had already slept til 12 and had no food until then and now this. So she just had a couple of spoons of her lunch. The last night was also a little rocky and I am very tired. I think it was just a problem with the position.
Now her eyes are glued to the TV watching Ratatouille with earphones.
After physio this afternoon we put her in the standing frame and she stayed there for about 30 minutes without any problems.
And then finally something into her stomach. Just fruit and yogurt but at least something. Now we are waiting for her supper in the hope that it will be pureed properly this time.

No problem! I am strong!!! Pneumonia is not getting ME down. I am weak but the Lord makes me strong. Thank you Lord.

 

THANK YOU LORD FOR OUR STRONG GIRL!!! 

Here we go again

Friday night at 11.30 pm we were sitting once again in the emergency rooms of Constantiaberg hospital. Celina was breathing very heavy and wheezy. After the doctor checked on her she was admitted to hospital. The first night we were in the normal children ward and then the next morgen they put her into highcare because her oxygen stats were so bad that she needed to go on oxigen.
She was started already in emergancy on nebulizers and then Saturday afternoon on antibiotics. Now its a night in highcare and it almost seems like her breathing is going worse again. But at least she is caughing nicely now, not only after the lung physio but also inbetween. Its 9.45pm and my child is still wide awake. They also put a drip in so that she gets enough liquid because she hadn't had a wee the whole day.
It's almost like the week had been too good and the devil could not watch this any longer and had to again throw a spanner in the wheel. Hey, we are still rolling and the spanner will break and the wheel will roll full power again because if God is for us who can be against us. Our Lord will never leave nor forsake us. Thank You Lord.

My poor little angel must suffer again

 

Celina by Jesus stripes you are healed.

Thank You Lord for giving your only son for us so that we can be saved, healed,healthy,prosper, delivered, and protected!

A great day

This afternoon after I fetched Celina from school we went to our appointment with the orthopaedic Surgeon. He was just blown away when I told him that Celina is now standing in her standing frame for about 45 minutes twice a day. He was very happy with Celina's progress and her recovery. And also that she is completely pain free. He says the left leg is still a little tighter then the right one but that is not hindering anything in her every day life. We also did a scoliosis study to compare with last years we did in January 2012. There is no change to the worse. I am very happy with the development and progress. We had a great day finishing off with going for a walk as a family through Wynberg park and another 30 minutes of standing before I got my angel into bed. She was so tired after this busy day that she was asleep in no time.

Standing is great.

Thank you Lord for the wonderful progress Celina is making and for the amazing day we had.