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