A few days ago I had a particularly tough day and in a low moment wrote a post about the hard times, those times when I could just cry, and sometimes do. I didn’t publish it, to be honest it was depressing and I got over the bad day and moved on. Today is the opposite of that, one of those lovely sunny days where the world seems good and people seem nice.
- This morning we had a great portage session, where Imogen didn’t cry (a first I think!)
- I had a new friend over for coffee, she is super lovely and has 3 adorable kids one of which has Down Syndrome so she came to share her experiences with me. She was honest, funny and compassionate and I am so pleased to have hopefully started a new friendship
- Imogen and I then went into town where a lovely elderly gentleman gave Imogen a £1 coin (an old fashioned symbol of good luck)
- lastly we visited our new opticians who were so knowledgeable and helpful
So yep, on that last point Imogen is getting glasses (I know, she is going to look super cute!). We’ve known pretty much since birth that Imogens’ eyes aren’t working quite as well as they should. Following an ophthalmology appointment when she was 10 weeks old we were told she would probably need surgery on her ptosis (droopy eye lids) sooner rather then later and scheduled to return 3 months later. 3 months passed without an appointment and I had to chase up to get booked in. When we got to the appointment at 5 and a half months we saw a different opthalmologist who was honestly useless. He barely looked at Imogen, told us he wasn’t worried about the ptosis at this stage and to go away and see how she continued to develop. We tried everything to get a referral for surgery at that point but he wasn’t budging and our original ophthalmologist, Mr V was in theatre so unavailable. We eventually left fuming and deflated. This weeks appointment turned out to be not with the right ophthalmologist again, thank god I called to check and got it changed.
So on Monday we went to Stamford Hospital (that’s our 6th different hospital visited this year) and saw Mr V, our wonderful ophthalmologist who took one look at Imogen, declared her eyelids terrible and said he wants her operated on in the next 6 weeks. It’s now a case of finding a hospital that is equipped to operate on her safely with the complications of her syndrome, and then an experienced surgeon to perform the actually eyelid surgery. It will probably mean going to London possibly combining treatment at Great Ormond Street Hospital with a surgeon from Moorfields, or maybe going to Addenbrooks in Cambridge. So now we are waiting to find out where we will go and on what date. eek!
He also retested Imogens’ eye sight and found she is quite significantly long sighted, and has prescribed glasses (+5 in both eyes). I questioned whether that was the reason she doesn’t respond to our faces much because we are just a blurry mess to her, he agreed that was a fairly accurate description.
I am also so pleased to have found a opticians local to us with great experience of fitting glasses for children with Down Syndrome and a supplier of the particular brand of glasses that I had read were best, Miraflex. So they’ve ordered some glasses in for us and I can’t wait to see how Imogens’ sight improves with both glasses and her eye lids corrected! Exciting and nerve racking times are ahead, and of course I will update on here, and post pictures of her in her new glasses too once they arrive.