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

Friday, May 20, 2011

Latest check up

It's been a while since we saw Dr Lam, he was overseas for a few weeks and we saw him just before he left. That was when Joel's eye had hemmoraghed from all the coughing he did when he was sick. We were on Prednefrin every 2 hours and Chlorsig every 3 hours. While Dr Lam was away, we ran out of Prednefrin so I went to our GP and got another script, I just didn't feel like we were really getting on top of the bleeding. Prednefrin is a very strong steroid. I kept going with the Prednefrin every 2 hours, gradually weaning down to every 4 hours, then twice a day. The eye has improved greatly, but there is a still a noticeable bleed coming from the right side of the iris. The rest of the iris is clear and the pupil is visable now which is great. Today, Dr Lam took another look in his eye and said that we do need to just really knock that bleeding on the head, so we are now on Maxidex 4 times a day. Maxidex is generally an adult corticosteroid, but we are using it for Joel as the bleeding has been ongoing for months and we just can't seem to get on top of it.

Apart from that bleeding though, his eye is looking a lot better than it has done in a long time. So, that means, that we can now get him fitted for his prosthetic! His EUA (Evaulation Under Anesthesia) is booked for the 8th June. Joel will go under a GA again but this time, no surgery woo hoo. Dr Lam will just have a really good look at the eye, and the Geelens (the couple here in Perth who make the artificial eyes) will be there and they will take a mould of Joel's eye and the surrounding orbit and make an eye to fit him. We are really excited about this. I know the prosthetic comes with it's own set of problems and new issues, but it will be so great to see if Joel can handle it and what he will look like in photos and when we are out with two eyes that look similar. At the moment we get asked everywhere we go what is wrong with his eye and when I say he's blind, the general response is "well, at least he's got the other eye". This way, hopefully no one will notice too much to really comment on it. His micro eye is looking smaller and smaller the more he grows, and if he can tolerate a shell that would be great. If not, I am happy for him to just go on with no prosthetic. I don't have an issue with how he looks anymore, to me he's perfect and the cutest little boy ever and I have absolutely grown to love his bunky little eye. I kiss it and pray for it all the time.

So, unless anything major happens in the next few weeks, my next post should include some more photos of him at the hospital - St John of God this time, I'm not going through PMH anymore, too frustrating. It will be especially good to have this artificial eye organsed before the next baby comes too, I'm 24 weeks today, and this pregnancy is very different to my first two so Joel's eye will be one less thing to think about.

I heard a great quote today too.

"There are two ways to live; one as if nothing is a miracle and the other as if everything is a miracle". Albert Einstein

I am choosing to believe in miracles for all my babies. I feel so blessed to have the two amazing children here to cuddle and laugh with, and the unborn miracle inside me, who will be here in God's perfect timing.

We are really excited to be starting this next "new normal" with Joel, my amazing little man.