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.