A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS

Persistent Hyperplastic Primary Vitreous

also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".


Perth, Western Australia

Monday, June 27, 2011

EUA this Thursday

It's Tuesday today and Joel's EUA (Examination under anesthesia) is booked for this Thursday. This will be his fourth general anesthetic in the 17 months he's been alive and I can tell you it never seems to get easier. I am glad this time that there's no invasive surgery, just a look at the eye and an impression of his little face and area around the eye taken so they can make the prosthetic. His EUA is at 1pm and he has to fast from 7am. He LOVES his food, so I'm not sure how this will go. It was easier the last few times because he was still a baby and not having solid food, but now he has discovered the delights of things like meat and carbs, he eats us out of house and home. I think I'll give him as much breakfast as I can at around 6:30 then drop Annalise off at school, come home for a couple of hours then drive around and hope he falls asleep in the car. He can have apple juice until 11am, apparently that helps to make them feel full.

As I am having a few complications with this pregnancy, I have been on bed rest since 22 weeks (I am now 29 weeks). I only really seem to leave the house for things like doctors appointments for both kids (it's been ear infection central for the past few weeks), Obstetric appointments for me and Opthamologist appointments for Joel. I am glad we're going to a smaller private hospital this time, instead of PMH as it will mean there's less room for Joel to run around in while we're waiting which means less up and down and chasing him around for me. Bed rest is really hard with the two kids but I try to sit down as much as I can. Rich has been helping to put the kids to bed, cleaning, cooking, as well as working 6-7 days a week. I will be glad once this pregnancy is over, Joel's prosthetic is sorted and life can continue as normal.

In one way, I am actually glad this is all happening to us. Our marriage has had it's trials by fire and I know that we are strong enough to stick together through anything now. It takes a lot to rock our boat now, we've been through the worst of it over the past 5 years. I do hear stories about couples who have sick or special needs kids and the arguments they have, the financial and emotional stress and toll it takes, and how appointments, check ups, surgeries, everything that goes along with it just filters in and take over your life for a while. We were like that, we had arguements about the best way to put Joel's lense in (when he was wearing one), who would look after Annalise while we were at appointments with Joel, the never ending question of "how much will THIS cost us?" If you're new to the journey, please be assured that it doesn't last forever! Your "new normal" will become just that, normal, and life will continue on a different and more blessed path because you have this amazing little person in your life. It certainly has given me more to be grateful for, made me appreciate the health of our children and really given me an insight into life with a child who isn't like the other kids. It's opened my eyes to societies reaction to someone "different", the stares and questions I never thought I would have to answer. Joel's education will be different, his teachers will need to make accomodation for him, there will be other facets of his life that we wouldn't have had the chance to experience if he wasn't blind in that eye and for that I am grateful. As parents, and as human beings, we can learn so much from these kids. We are humbled by them and in awe of them, of their weakness and their many strengths. Hug your kids tight and tell them how special they are.

1 comment:

  1. It is amazing how differently the world treats a child that doesn't fit into their version of right and normal. He looks like he is a real trooper. His eye has to be very uncomfortable for him and yet look at his sweet smile in the photo where he is riding the toy. You are doing a great job. I hope you don't mind, I will be praying for both of you on Thursday. Hope it goes great.