Eric's CVID Journey

So happy news, our big boy has been enrolled for next year. He will be going to a small home schooling facility 😁

So update on our hero. He has a bladder infection but has also had to go for blood tests are there is somthing going on with his liver. Will keep everyone posted.

So our little super hero isn’t doing very well at the moment, high temps , can’t control his bladder , bad headaches and sore tummy. Had already called his immunologist today to sort out blood tests but tomorrow will be calling again for an appointment.
He is keeping his head high well feeling very ill.

I really wonder. A temp of 38.8 devlops and I go into a flat panic. Watch every breath to make sure he is still alive. Meds make temp drop and the little monster we love is back. He has just been on a course of antibiotics, so what is wrong now. In every other child it would be a quick trip to the Dr. I now know this is a new round of blood tests and visits to the immunologist. The fear that now we have to go onto immuno Theropy is once again here. A temp means an infection. . And in a little body who can't fight infection.. What does that mean. Get through the night.. Get to the Dr. That's the cvid curse.

So it’s been awhile since I have done an update on our little superhero.

He has had a few fever episodes which is common with CVID patients. But other wise he is keeping strong.

Eric has been seeing a therapist to help him deal with issues. I had a follow up with her today and he seems to be dealing with a lot of what happened to him when he was in a coma. Through play therapy it is coming out he remembers bits and pieces and is not sure how to deal with that. But other wise he is a very smart little man.

I hope everyone is staying safe through Covid-19 .

Sending love from myself and Eric thank you to everyone who is there for us even though the incident happened nearly 2 years ago we are still going through a lot and it’s still a battle everyday.

Best Christmas Present I could ever ask for.

Such awesome news.. Eric just had his check up.. Doing so well Dr Ash says he doesn't need blood test for now. His lung capacity has improved so much he is going to start weening him off the asthma Meds next year. His growth chart is a straight line up so not even a curve. Up from 15.2 kg in May to 19.3 and he is up from 102cm to 113cm. Needs to have his 6 year old inoculations now

Eric was so excited this morning

New to our collection living succulent wreaths. R120 each. Find us at the life ministry Christmas market in Alberton on Saturday. We will be bringing all our creations, herbal salts and chutneys

Our big boy is out of . Tonsils are finally gone.

So after months and months of fighting we have finally got authorization for Eric’s tonsillectomy yay 4th August here we come ..

So our brave boy had another round of blood tests and not a single tear . He’s getting far to use to having blood tests done .

Now it’s the waiting game. Positive vibes only

This time last year we were at the union hospital with our little man fighting for his life. At this stage we had no idea what was happening, all we knew was he was in septic shock and on full life support. 10 days later after a week in pediatric I U C on life support he came home. Numerous tests later, we were told he has CVID, he is asmatic, and highly allergic to mold. We have had to change our lives quite dramatically, trying to get the whole house tiled (not quite done yet) , leather as apposed to fabric lounge suit. Still need to change curtains for blinds. Luckily we were prepared for covid as Eric has had to do the whole mask and sanitizing thing since he came home. 8 moths on antibiotic therapy, has killed his teath, he has had a few really bad bouts of tonsillitis but we still waiting for authorization from the medical aid to have them removed. Next round of blood test due this week so then we will see how his immunity is holding up now.

Eric is growing like mad, in size, personality and attitude.

Thanks to the crowd funding we managed to pay all the Dr's bills and most of his testing, but we still have massive hospital bills to pay. We will start fund raising again once covid allowed for events to take place.

We are all eternally greatful for all the love and support shown to us from family, friends and complete strangers.

Keeping a close eye on Mr Mr has had a sore throat but that’s about it

Eric has been on lock down since the first COVID-19 hit South Africa but to keep us busy we have managed to get his room done. Well mostly done. A superhero room for my superhero

So we have a really bad infection in our jaw. Infection levels are rather high but the doctor wants to try oral antibiotics before we admit him. We have a day to get it down or into the hospital we go. Praying he gets better soon . Hate seeing him in so much pain.

Haven’t updated In a while. Eric has had more blood tests done we just waiting for the results now from the dr. We still fighting with medical aid to cover some bills . He’s struggling with his teeth because of the antibiotics so got to get him to the dentist.but he’s happy at the moment so I’m happy and feeling blessed

So Eric definitely has tonsillitis is on more meds and now got letters from 2 Dr’s for medical aid to do an urgent tonsillectomy for him.

Sick 😷 again. Looks like tonsillitis if his temp doesn’t break back to the casualty department.

Loving the fun in the sand. So greatful to be able to experience this with him. Love you my superhero

We are so blessed to have our superhero with us this Christmas.

Our superhero not feeling so good at the moment complaining heavily about tummy aches.

How far has my superhero come. 5 years ago and he still sleeps exactly the same

And our superhero turned 5 and got to see his cousin and uncle and aunt who have moved back home. Eric got to be his fav superhero for the day Captainamerican Marvel. So proud of him he fights every day to stay healthy. Proud mommy love you my superhero

Eric got to meet and spend quality time with his baby cousin.

Rain makes me so tired aunty Cas. Can’t believe our superhero is nearly 5. I am greatfull that we are getting to spend his birthday with him after everything he has gone through this year.

So Eric's school year came to an end. He missed half of it but we sent him as often as possible. Here are a few pics from his concert. Thank you teacher sonya and Tiny Town for being the most amazing people and place for our superhero .

Eric’s early Birthday party at school. They all happy to be able to celebrate with him after the year we have had.

I’m not the best painter but making my Superheros room into superheroes just like he is.

Had our little warrior at the DR this morning. He goes in on Monday for his tonsils.

Update on our little man. We were back at his doc yesterday had a lung test he definitely has Asthma so on inhalers now twice a day. We have to have his tonsils out before Jan. His next appointment is then and we do new bloods in March and decide which course of action to take. He is still on antibiotics every Monday, Wednesday and Friday. He is doing a lot better but we still have had a few scares.

Having to keep a very close eye on our small person as he has been spiking temps since last night.

Photo day at school. My Spider-Man

Days like today make all the hard times worth it.