Wow, the length of this thread must be breaking some kind of record!

It sounds like everyone is coming along nicely, despite some lingering mysteries. I hope that answers come soon and offer some helpful solutions.

Also, I think we would all like to see video of this dancing that Zachariah has discovered!

Joe is doing well, now 13 months old. We had our first visit from a VI teacher (only 6 months after requesting one!) who was able to tell us more about what he can/can't see than any doctor has. His range is still not great (he loses you if you back up more than a few feet from his face) but he can see clearly enough within that small space to laugh when we make faces.

He didn't gain a SINGLE OUNCE between his 9-month and 12-month checkups, so now we have his growth to fret over too. It's a shame, because eating/sleeping were the things we thought he was really good at. Here's hoping the sleeping remains undisturbed!

Still way behind in gross and fine motor, but making strides in therapy. He does sit without help now, and suddenly seems interested in crawling -- though not very good at it.

You all are on our minds a lot. I hope you're enjoying your summers!

hello, gosh i don't know if people are still reading this or not but i will give an update on us anyway....

Well sad news to start, i was pregnant with baby number 2 but sadly she was stillborn at 20weeks, we named her Angel. its still early days and i'm struggling to come to terms with it but it has really hammered home how blessed we have been with Zachariah. She will be in our hearts forever.

Zachariah now 22mths is doing brilliantly with his vision and appears to be seeing everything although has ato work very hard to see and has an awkward head position. he also appears to not see when distressed or ill.
We are still waiting to find out what is wrong and seeing the opth, paed, vista, neuro etc for answers. he's actually due another mri in november which will either explain it all or hopefully rule out brain damage completely.they're going to do blood and urine tests at the same time.

we also have added to the list now a speech therapist as he is still yet to say ANYTHING althougb appears to understand a lot so quite a clever little cookie. they're wanting to start him up on some home visit scheme with them too so we'll see

AND

a physio is on the list as he has an inturned left foot, which they said not to worry too much about until he's 3 BUT he also appears to have one leg longer than the other so thats being checked out too.

We've not put him into nursery yet but tha is the next step although still waiting to be assessed for the one on one help.

We just started him on tiny talk sign lanuguage and it looks like it will work brilliantly although due to recent life crapiness haven't been for a while but will try and get back into it soon for him as all he knows so far is 'milk' but it's been brilliant.

i hope that all of you and your little ones are doing well, i'd love to hear how you are all getting on now and pray that it is all good. thinking of you =)

oh waiting4baby i am so sorry to hear about angel! you and zachariah sound like you are doing really well, though, and i hope each day gets better and brighter.

all is good with us here in new york. as far as milo's vision we found that he can see lights, which isn't much but it's better than nothing. hopefully it will help him with mobility, etc. he has started walking!! well, right now it's just back and forth between my husband and i, or just very short distances but he is getting sturdier every day. i am so proud of him!! i thought it was going to take much, much longer because he's always been very cautious, but he seems to really enjoy the fun of trying to walk. we've also been getting some great services and i've learned that there is a toddler program here for blind kids when he turns 2. it will be great to have him be able to play with kids his age who are in the same boat. we really don't get the chance to play with other kids very much and i worry that he is not getting that experience.

we've been getting speech lessons for the past few months and i have to say milo's language seems to have taken off since then. he wasn't saying anything at all at around a year and in the past 3 months he's up to 10 or 15 words and new ones are coming every day. like zachariah he seems to understand what is said to him so hopefully he will just keep coming along. i really can't wait until he can talk and i can explain things to him.

anyway, i don't check in much over here anymore but great to hear how you are doing waiting4baby. i hope everyone else is also doing well -- this has been such a great forum.

Hi everyone,

Its been a long time since I've been on here. So sorry to read about your hard times Waiting4baby. Wish you all the strength in the world.

As for Leo he is doing great, he's amazingly clever, he can say in excess of 40 words! He's 21 months now. Still not walking, but he's getting there.
He goes to nursery 3 mornings a week at the moment as im at college. Loves it there. I was so worried initially but he's doing really well.

I am a bit panicky at the moment because we're waiting to get a second kidney scan, they found cysts the first time. Normally that is nothing to worry about but aparently with LCA it can be a sign of a condition called senior lokem syndrome which is very serious and life threatening, so im just praying its not that. He has no other signs.
Hope everyone is doing ok, and that your babes are all great xxx

Thank you both
milos mum, it sounds like he is doing brilliantly, how wonderful that he cam see lights and is starting to walk and talk. It's great there's a service when he hits 2, I'm sure he will come on leaps and bounds with others to follow. We also don't get much interaction with other children so I've joined up to a load of groups recently in the hope it will help. Fingers crossed milo continues to do brilliantly. X
leos mummy, how clever is Leo to know so much!!!! That's fantastic, can I ask at nursery does he get one on one support? We've been put on a waiting list for assessment for this service but I don't know if we'll be accepted.
I'm so sorry to hear about the cyst scare and hope that you get a scan date quickly to avoid any prolonged worrying and I pray that it will be nothing, and your amazing little boy continues to show off at how clever he is :)

I'm so glad people still pop in on here as it's lovely to hear how you're all doing and I've found this thread to be a great help and hope you have too.
we're getting into Christmas preparation now and I have my 'santa' hat on...... Zachariah is spoilt rotten because he's just too darn cute lol
Take care and good luck with all you're doing, you're all in my thoughts and prayers x

Hello all!!
It's wonderful to have some news off everyone-I frequently check 'over here' and it's fantastic to get updates!!

Waiting4baby i am so sorry to hear about your loss, I know that you will forever have your Angel in your love and thoughts, I hope however that you are able in time to get to terms with your loss.

You and zachariah sound like you are making huge steps, and hopefully you will soon get some assesments and support from the services.

Milo's mum-sounds like your little man is doing really well-and it will be fantastic for him to meet some new friends when he gets to his new group!!

Leo's mummy-what wonderful news-I'm glad he's settled in well at nursery! I hope that they don't keep you waiting too long for your scan-please keep us updated on your news.

Lillith is continuing to be a joy to me-I have found this year very hard, This week I left my job as i took redundancy as I couldn't face fighting for my job. I have found a job in a local shop which is good-but already have had to miss a day due to sickness-damn bug's!! So that's worrying me!!
Lillith is 13mths now and says around 30 words, she crawls and cruises and is so cheeky!! She holds her head tilted down and to the left to still her nystagmus and will keep her new glasses on as long as we are not walking outside in the pushchair!!

She has been cleared from Portage which is great and once walking physio may discharge her too!! We have been going to a group called 'Vizzi Babes' since she was 16weeks-this is a group of visually impaired children-its a small group run by her VI teacher.

We had all the wonderful discarge/how well she is doing news on the 4th November-which was great-only 2 hours later we where told she may have a form of epilepsy which results in her having abscence seisures-so a bit of a bittersweet day.

We have a EEG on the 30th November and then her EDT's on the 4th December-both in the same week!! Poor monkey!

Anyway sorry for the waffle!! I think frequently of you all-take care everyone xxx