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Is My Baby Blind??? Part V

March 20, 2009 By 17 Comments

So the appointment was made for a week later to go and see the neuro-opthomologist.  My mother in law was taking me this time.  Again my mind was much too blurred to actually drive in a lot of traffic.  I had a little shred of light lit in my heart and was feeling just a tiny bit better.  I was trying so hard to remain optimistic!  I had to for my sake.  If I let all of these things get me down I would have quit a long time ago!

On a little side note I have to tell you that it is no joke going to a neuro-opthomologist.  They are VERY specialized.  When the other doctor’s office was making the appointment, they warned me to check that my insurance would cover it.  When I called my insurance company they told me there were only 2 doctor’s within 200 miles of my house in this specialty.   It was the doctor whom they had already made an appointment with or one in New York City.    I live within and hour of  “the city” so this is BIG!

So anyway, we are off to this appointment and arrive a little early which is what I like to do when I am stressed.  I think that every ten minutes this doctor was scheduled to see about 4 people.  He was running very behind as anyone would with this type of schedule.  I was so anxious sitting there in a cold and uninviting office.  There was no rug on the floors.  The chair was not comfortable.  No matter how nice you were to the staff they were down right nasty!  I felt like yelling at them.  I felt like saying, “don’t you know that I am here because my 4 month old baby cannot see?  Where is your compassion?”  I did not yell though.  It is not what I do.  I seethe inside instead!

After about an hour and a half we were called in.  At this point I had convinced myself that the baby was seeing a little more now.  I felt silly being there.  Trust me there was still something going on.  I was holding onto my mom dreams again.  I know we all have them!  We have to to make it through most days!

After he examined her he had said that Analiese had a visual maturation delay.  I looked at him like he had 6 heads.  I had no idea what this meant.  I was lost!  I guess he could tell because he went on to describe it to me.  The mylon sheathing on her optic nerve had not developed fully.  Over the next few months it should continue to develop.  Right there I was thinking, “is he saying what I think he is?  Will she be able to see?”  I was jumping out of my skin trying so hard to listen and calm my thoughts.  He then went on to tell me that by six months her vision should come in.  He said we did not need to go back unless it doesn’t happen.

After this rather quick diagnosis my mother in law started asking questions.  The most profound one was how common is this.  His words are words that I will never forget.  He told her, “We see three or four of these a year so it is pretty common!”  Was he kidding?  He is the only doctor in this specialty in the entire 200 mile radius and this is common?  His idea of common were jaded!

In the end Analiese’s vision came in slowly.  Now at almost two she can see wonderfully!  I thank God each and every day for this!  I am not sure that I could have handled another disability in my life at the time.   Especially not one that would have been so life changing for all of us!

Becca

Links to the Full Series

Baby Blind Part I
Baby Blind Part II
Baby Blind Part III
Baby Blind Part IV
Baby Blind Part V

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Is My Baby Blind??? Part IV

March 19, 2009 By 9 Comments

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So the big day was here.   We were off to see the pediatric opthamologist.  I was a nervous wreck.  I had asked my sister in law to take off and come with me.  I did not think that I was in the right frame of mind to drive the hour it would take to get there.  I cannot even begin to tell you all of the things that went through my mind in that hour.  I was so upset and scared and anxious.  I honestly wanted to blow off the appointment and just accept it.  I guess that is always my first instinct.  Not to deal always sounds better then the alternative!

Once we were there they were very nice.  It was another huge office building with lots of people dressed in kids scrubs.  When we went into the room the nurse did an intake.  She asked a whole bunch of questions.  Most of the answers were no.   There was no degenerative eye conditions in the family.  There were none of the 1000 questions she had asked.  The whole time I was thinking that if there were none of these things does that mean that nothing was wrong.  You know that that is what I wanted.  To go there and to have the Dr. tell me that my Dr. was a moron and send me home.

As the Dr. came in to examine her he seemed a little cold.  It could have been me because I am sensitive to this but he seemed annoyed in some way.  I held her in my arms and he did the flashlight trick and a few others.  The last thing he did she had a slight response to.  My sister in law was so excited.  I did not buy it.  I figured it was a sound she had followed.  Either way was one response out of the 50 times he had done it a good odd?

In the end he had told us to go to a pediatric neuro-opthamologist.  Now I do not know about you but I had heard of a lot of things but this specialty was not one of them!  He had explained that it looks like it could be something she will grow out of.  I was a little relieved.  My sister in law was a lot relieved.  As we drove home we talked a lot.  She had gone over all of the reasons that she had felt good about the appointment.  All I could think was of the bad.  She had a few points like the one that it could just be a development thing.

We were talking so much that she was speeding.  Of course she got pulled over and ticketed.  I told her to tell him that we were discussing your blind neice and the doctor’s appointment we had just come from.  Tell him that my baby cannot see and you were trying to make me believe in the little shreds of hope that the doctor had just provided.  We giggled some while he gave her a huge ticket.  So much for her helping me.  You see where that got her!

Becca

Links to the Full Series

Baby Blind Part I
Baby Blind Part II
Baby Blind Part III
Baby Blind Part IV
Baby Blind Part V

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Is My Baby Blind?? Part III

March 18, 2009 By 15 Comments

So there I was at home that afternoon.  Abigail and Emma were still in school.  This meant that I could look online and learn all that I could about blindness in infants.  I know that babies are not able to see well the first few days of life.  I read and read all afternoon.  I did not see anything good.  I saw ways to help your blind child, I saw ways to tell if your child is blind and a million other things.  I kept doing the experiments suggested in hope that she would see something and I could end all of this.

So I shined a light in her eyes, I pointed her to the window to see if she would look out it.  I did everything that every web site had said to do and still nothing.  I cried for about 5 minutes and then picked myself up!  I said, “OK so she is blind.  There are worse things.  She is healthy other then that!  You can do this.”   And there it was.  Just like with the Mastocytosis (which can become cancerous), just like the cerebral palsy I could do this.  It was all going to be alright.  I said it again and again and again until I believed it.  I started to read about what to do with children who are blind.  I read all about ways to stimulate blind babies.  If I could not change it then by God I would educate myself about it. analiese-coming-home-from-h2

As I called my husband and told him he had the same response that his mother had.  I told him all the things I had been looking at and was, by this point, even cracking jokes.  I told him that we could get another dog now because Analiese would need a seeing eye dog.  He even started cracking jokes about it which are worse then my dog one so I will leave it out.  We were ready for whatever was to come.  I guess it is the kind of thing we had been faced with before.  We learned early on to accept it, deal with it and move on!  Now I was in the moving on stages by the afternoon.  That is until my in laws all got together and sent a huge margarita glass filled with flowers.  I cannot tell you what the card said but there I was crying again.  Partly because it was all too much and partly because it is always nice to know that you are loved!  Love was what I needed right now and they knew it.  That is why they are so great!

All day I helped Analiese and tried to get her to track things.  My father was convinced she was following a rattle.  I had explained to him that she was following the noise and after about 30 minutes of trying other things he gave me a great big bear hug.  This is what my daddy is best at.  It was his way of saying it is not fair.  You have too much.  It was his way of loving me.  It was his way of saying it would all be OK.  Just like daddy always does!

Becca

Links to the Full Series

Baby Blind Part I
Baby Blind Part II
Baby Blind Part III
Baby Blind Part IV
Baby Blind Part V

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Is My Baby Blind?? Part 1

March 16, 2009 By 23 Comments

analiese-coming-home-from-h

In order to tell this tale I will have to take you back almost two years.  There are two reasons that this story has popped back into my mind this week.  The first reason is that, as I mentioned a few days ago, this month is disabilities awareness month.  The second reason is because in May my “baby” will be 2!

I have to take you back to when the baby was just that, a baby!  I already had two older kids who were now 3 and 6.  They were so excited to have a new little sister.  I remember when they came to the hospital.  Emma who was three at the time was so excited about this new responsibility being thrust upon her and Abigail acted like it was nothing new but she was still excited.

As the baby grew over the next few months I noticed a few things.  She would not look at me.  In my mommy heart I knew that this was not a typical thing.  Then I started to notice that she was not tracking things at all.  In my head I kept saying, “she is fine.  You are just worried because of Emma (who has CP).”  Then I had noticed that she wanted to be held all of the time!  She hated being in a swing and would scream like she was scared if she was anywhere but my arms.

Because she is my baby and most likely the last I was kind of happy about it.  I helped her more then the others and was happy to do so.  She loved it when I played music and talked to her as long as I was holding her.

As the months went on the fact that she was not looking me in the face or tracking the fun toys I was waving in front of her was more and more obvious.  She looked through me.  Certainly not at me.  She would smile a little but was not mimicking faces.  So by the time she was three months old I was worried!  I had decided to ask the Dr. what was going on.

So as we went into her three month appointment I began to worry more and more.  I went through everything with him and when he asked about concerns I blurted out that she is looking through me!  I was on the verge of tears and took a breathe.  Then I explained how she was not looking at bright objects, she was not looking at my face, she would not stay unless held and she was not tracking.  I blurted all of this out as quick as I could.  The next part was for him to tell me that I am being a paranoid mother and to go home.  Well that is not quite how it happened.  He began to wave a light in front of her and nothing!  Her pupils were responsive but it was like she could not tell he was shining a light right into her face.  She did not blink, her eyes did not tear, NOTHING happened.

Links to the Full Series

Baby Blind Part I
Baby Blind Part II
Baby Blind Part III
Baby Blind Part IV
Baby Blind Part V

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