Hi, I hope everyone is well. I just wanted to say hi as I am thinking of you all.

As usual there are so many ups and downs with this waiting. For me, like waiting4baby said, it is easier to believe that Milo is blind. And if it turns out that he gets his vision back then it will be a wonderful miracle. But I feel like I need to move ahead. I have signed up for Early Intervention and they will come on Monday to do an evaluation. I think this is something similar to Vista in the UK maybe?? Not sure, but it makes me feel good -- like I'm doing something that will be constructive for Milo. Also, I joined a support group for people and parents with LCA. Hannah, you might be interested -- if you go to groups.yahoo.com and search on LCA it is the first group to come up. They are wonderful at that site and it is really good to read about adults that are leading full and wonderful lives even with blindness. There is also another smaller group called Blind Babies that may be of interest.

Also, it's been a good week in general. Milo is smiling more and more each day and for the first time I feel as if he is responding to specific things. A friend gave us a toy that makes noises and he will almost always smile in response to it. Plus, he is cooing a lot -- making a lot of "ah goo" and "ooh ahhh" noises that are new for him. I am thrilled. He is still pretty lazy about lifting his neck, but it seems to be fairly strong so hopefully that will come along eventually.

Oh, also, waiting4baby -- i spoke to my opth earlier in the week and he said he has personally seen sight return from DVM happen as late as a year and has heard of cases that go even later. Just wanted to pass that on.

Thinking of you all...

Jodi

Hi there,

Do your childeren cry with tears and do they blink frequently. Kamil doesn't but when I mention this in the hospital they don't pay any atention to it. But I think it's weird. I also notice that he has a sort of shiny layer over half his eye. Just below his pupil. The opth. hasn't mentioned it. I will ask the pediatrician about it tomorow.

Sorry for all thes questions, but I'm looking desperatly for anserws. It takes so long! I'm glad I can ask you. It really helps to talk about it with you, you know how it feels and how frustrating it can be....

Marieke- Yes, Milo cries with tears and blinks. But I have looked at him and thought that he definitely blinks way less than I do -- don't know if that is a baby thing. Also, not sure what you mean by the shiny part of the eye but I don't think I've noticed that. Good luck with your next appointment!

Hello All,

I have some news about my Maia(8 months now).
It seems that she is seeing something : She started 4 weeks ago to follow a little bit the people arround her, and some toys. It seems that in the last 4 weeks she improved. Now she is looking to us, she is following us arround the room, she is looking to some toys and to her hands.
But still she is in trouble with her head which is not very stable, she is not sitting by her own, she is not crawling, she is missing coordination eye-hand means that she is not grabbing toys or something else, only if she is feeling the toy touching her hand.
Otherwise she is eating just fine, she is happy, she is making a lot of noise but stil she is not making siblings like dada, gaga, etc.
And another thing - she doesn't like to be held in our arms with the face towards us(she is pushing herself away), if we held her with the face against us than she is fine.
And she wants to stand up and to make steps all the time if we are keeping her of course because otherwise she cannot standup by herself.

Me and my wife : we are somehow happy but still scared and worried about the issues that I mentioned about.

We are working a lot with her(some exercises each day) and also she is under a treatment each month 10 days with some brain vitamins and proteins. This treatment was precribed by some doctors here in Romania. In Germany, the doctors said that there is no reason to give her a treatment. Now we really don't know what do to. To continue this treatment or not. Our Maia is developing some sight because of the treatment or because this is her way.Dis she had something wrong or she is just delayed.No doctor said to us something clear. Only that they cannot say that there is someting or there is nothing. All the tests came clear.....but you can see that she is not developed like she is supposed to be at her age.:roll:

Hi everybody. Claudiuf - wonderful news about your daughter, I'm so happy for you :-).

And MilosMom - thanks for sharing the information about DVM later than 6 months. My son is 8 months now and it is good to hear that we can still hope for DVM.

In the meantime we are waiting for the results from the MRI. Hopefully we will get the preliminary results this week, otherwise we have to wait until October 8, when we will se the neurologist.

I feel really low today. The uncertainty about our son's vision has taken over everything and we can't go on with our life until we get a diagnosis. I wish we could do like you Waiting4baby and start planning for a life with a visually impaired child - but what if there is more? If it is just his vision i would feel so relieved. What if there is more? I'm so worried about brain injury that it is almost all I can think about right now.

And I feel bad that I can't enjoy life the way I should. My son is so happy and content. He smiles a lot and Saturday night he couldn't stop laughing when I made him jump on my lap. I think he has started some crawling-attempts, and finally he seems interested in exploring things with his hands. When I read the paper and he sits on my lap he crumbles up the pages and tries to put them in his mouth. This is a step forward, definitely.

I also have a 2 year old daughter who is just wonderful. She loves to play with her brother; he lies on a mattress and she brings toys and pillows and pretends that it is a boat.

My son blinks normally I think. As for crying with tears - he almost never cries! But I have seen tears, I remember I noticed 3 or 4 months ago.

Sometimes it looks like my son is trying to fix or focus on an object. Then his eyes get crossed and it looks like he gives up. Do your children get cross eyed sometimes?

hi too all,

So good to hear maia is making progress! Hope she will keep developing like this Claudiuf.

How are the others doing? Some days I'm doing fine, other days I can't stop worrieing. The appointment with pediatrician didn't give us much more information. We just have another doctor to add to the list.
Fysically Kamil is doing fine, he's growing perfectly, his hart and longs sound fine, he can roll from tummy to his back, he rolls from his back to his side, he can keep his head up and he can sit with a little support. So that's all good.

When I mentioned the funny looking shiny layer (like a contactlens that has slide down the eye a little) I see in his eyes to the pediatrician she looked and she said she good see what I mean, but she couldn't tell what it was. She told me to wait and ask the opth. in november when whe have our next appointment. But I don't want to wait this long.
So I made an appiontment with our housedoctor (how do you call him?)
to get an second oppinion in a academic hospital. I must be shure it's nothing serious, but I still think it's not normal, especially because of the rarely blinking and not crying tears.

Am I an overconcerned mother now?
I also asked if Kamil could have Leber's and if he could be tested for it but she didn't take it very seriously. She had never heard of it and because I heard about from some other mother it didn't mean that Kamil has it..... Whe had to discuss it whit the clinical geneticdoctor. I'm trying to get an appointment there too. She will do the blood testing.
I'm glad I only work two days a week it all costs me a lot of time, but I'll do everything I can to find out what's wrong with my son and how I can help him.
I've also filled in forms for visio, an organisation that helps blind and poor sighted people at home, at school, etc. I hope they can be of any help.

Another question... I 'm looking for some nice toys for Kamil, I could use some tips!

Sorry for my long message again, but it's so helpfull!
I'm very curious how you are all doing too, hope to hear from you soon!
Take care,
Marieke

cjk,

I really know how you feel. I feel the same, it's keeping me bussy all day!
Kamil doesn't seem to get his eyes crossed. But he almost never focusses on anything either....

I hope you get the results on the mri soon! let us know if you do.

I admire the way most off you are dealing with this! I just can't accept that Kamil is blind untill whe know for sure (not that it would make him any less!) You are all so strong, I'm only trying to be, but find it very hard.
Thanks for sharing your storys.

Marieke

Hi CJK,
It is great that your baby can respond to objects put infront of him. It is good to hear that he is making progress.

William is nearly six months old now. Progress seems to be very slow. He can track objects and will smile in response to sound but still no response to our faces. He will copy the odd sound if I blow a rasberry or say gee. He seems to look at the light when its on and will look around sometimes, but other times he will just sit in his bouncer, high chair and not make a sound.
He will sometimes 'look' at his hands and often go cross eyed when they are close up to him.
He hasn't reached out for any toys yet, we are still waiting.
Our next appointment is in mid November for a check up. Its all such a waiting game.
As for crying real tears, we haven't had any tears yet. He doesn't seem to cry a lot, only when his teeth are hurting.
Just thought I'd let you know where we are up to.

Hi Ahh: I don't think my son sees the objects put in front of him. It is when I put toys in his hands, or when he feels the structure of the newspaper that he gets interested in touching or exploring them. No eye contact whatsoever, no following light. Sometimes only briefly he seems to react to black and white things but next time he is not interested.

Hello all

Claudiuf I am so pleased to hear that miai is making such progress, how wonderful for you.
Milos mum thankyou for telling me about the progress at 12months, I have also heard this and even as late as 18months, I think we have until 2 before it becomes very unrealistic!
Motherof3, zachariah never cried tears in the beginning as it takes a while for a babies tear ducts to develop, I don’t remember when he did cry tears but it was certainly a couple of months after birth. Also could the shiny layer be a cataract? I don’t know if they have already checked that but I do know the earlier its sorted the better.

Please all of you do not give up hope, I am in no way preparing for a life with a blind son, I am just not preparing for a life with a normal sighted son either. I know in time I will have to do the research and get my head around all of this. BUT. like all of you know, it is very difficult to just get on with your life with the endless visits to hospitals, drs and house calls etc.

Personally I think we are all doing fantastically, not one of us have said we don’t love our children, and we are all on sites like this because we are desperately trying to get our heads around it. We play with our children and we are doing everything in our power to help them, don’t be so hard on yourselves. Every step zachariah makes I am so proud of him and also proud of myself as I feel I have helped him get there, you should all be proud of yourselves too as each one of you is talking about what happy content little babies you have.

Look after yourselves and I really hope you all see some progress or get some good news very soon.

twice again! sorry

[Modified by: waiting4baby on October 01, 2008 02:24 PM]

thanks!
You're absolutely right! We are doing great and our childeren are happy and loved, it's not easy but we are all doing the best we can and maybe even more!
Thank you for pointing that out.

Marieke

no problem

just thought,... you were asking about toys

really in the beginning zachariah wasn't really interested in anything and i think a lot of this is just because he was too young but things i've found good are

mirrored disco ball - this was one of the first things he appeared to 'see' due t it being shiny and reflecting light onto his face. i used a rainbow one for more colour but dont know that it really mattered

http://cgi.ebay.co.uk/2-Inch-Rainbow-Disco-Mirrored-Ball-Ornament-FREE-Ship_W0QQitemZ5676488802QQcmdZViewItem?hash=item5676488802&_trksid=p3286.m63.l1177

squeaky/crinkly dragon - visualy this did nothing but he did get very excited when he heard the squeaky noiuse and enjoyed making the crinkly sound

http://www.twenga.co.uk/offer/20872/8762989574585440865.html

(this isn't the dragon i got but gives you an idea.)

elephant mirror - this was good for everything they tell you to use for stimulation as it was noisy had flashing lights/mirror/ and movement also great for letting him sleep when he cried at lack of noise

http://www.walmart.com/catalog/product.do?product_id=4241554

i'll see if i can find more later for you

Hi all!
Today we got the preliminary results from the MRI by phone, and everything seemed to look perfectly normal :-). SUCH a relief! It's all we've been thinking of for the past week.

Next week we will see the neurologist and learn more about what the next step will be. They will also compare the x-ray pictures of our son's brain with pictures of a normally developed brain (at 8 months) to look at the maturation.

We celebrated with a glass of champagne :-)

woh! That's good news cjk.

Where having an mri planned on the 21 this month, I hope whe can have champagne too....

oh cjk that is fantastic news, i am really happy for you and your family, that must be such a load off your chests. really hope the neurologist appt goes well and he comes up with some handy information/ suggestions

good luck mother of 3 for the 21st really hope it all goes just as well for you.

hope everyone is doing well, thinking of you all, take care :\

Hi CJK, its BRILLIANT NEWS that the MRI was normal! What a relief for you. Its one less thing to worry about.

Mother of three, I've got everything crossed for you for the 21st. Please let us all know.

CJK, that is wonderful!! I am so glad to hear your news. Marieke, we will also be having our MRI on the 21st so I will be thinking of you. I have to be honest, I am really terrified. Of course, I will love my son no matter what happens, but I am desperately hoping we are not looking at any issues other than blindness. Please keep me in your prayers...

Hi,

Molismom, I'll be thinking of you too! When will you get the results back? Whe are having an appointment with the neurologist on 28-10. He will show us the results than. I must say I don't really know what to expect. One day I'm confident it will be alright, the other day I'm worried sick. Appart from the blindness Kamil is doing well, so that's reasuring.

Marieke

CJK, great news! Congratulations.

Milosmom and Motherof3, i'll be thinking of you both on the 21st, good luck with that, i'm sure it will be fine.

Quick update from us. Leo is doing great, i'm really impressed with his development this last month. He can sit for a length of time, is rolling all over, babbling ALOT, and finally taking some weight on his legs. Really proud of him, he's just so clever. I'm amazed everyday with him, his co-ordination with his hands is unbeliveable, he can pick up small things and find's what ever is in his space with ease.

Hope you are all well, and your little ones are thriving.

:-)