It's actually been almost a month since her eye appointment, but I am just finding time now to sit down and blog about it. In the future I am going to try my hardest to update as soon as Lilah has had an appointment, because I find I have a hard time remembering exactly what was said and done. As most people know I have a horrible memory, so it is best if I write it down as soon as it occurs. I will try my best to recall this past month.
I was warned by Susan that Dr. Bermen wasn't the friendliest guy, not that that surprises me too much, seeing as how 90% of the specialists I deal with up here are a-holes. We pulled up to the Maine Eye Center in Portland, which just happens to be this massive building. There was a parking lot full of cars. You walked in and there was actually an information desk to direct you where to go and a map of the place. I guess they do everything there including lasik eye surgery and other eye related surgeries. Dr. Bermen is a pediatric opthamologist, so of course there was a waiting room full of adorable children with big glasses lol Initially we didn't have to wait that long before they called us in. The nurse asked us some standard questions, like what are concerns were. The doc came in and did some tests that pretty much involved looking in her eyes with a light, turning the light on and off, i'm assuming to check how they dialate, and spining her around and around on his lap in a chair. I guess he did this to see how bad her eyes shake, because I mentioned this to him. He immediately noticed the nystagmus ( her shaking eyes). In fact they were quite shaky, the most I've seen them in awhile. In a way I was glad they were doing this because, I was afraid he wouldn't get to see first hand what I was talking about. He noted Intermittent Nystagmus which basically means her eyes shake but not all the time. Nystagmus is a constant shaking of the eyes. I couldn't read him too well but he seemed to be concerned about what he saw. The whole time I was just thinking please whatever it is, just don't let her be completely blind. I dodn't find him to be a kerk per se, but he was kind of cold and uncaring. I'll never understand why doctors choose their specialty in pediatrics if they have no bedside manner, anyways, the nurse put drops in her eyes to dialate the pupils, then sent us out to the waiting room to wait for them to dialate. This took about 45 minutes in which she was able to sleep. Let's just say she wasn't too happy with the drops and screamed until she was blue in the face. In the meantime, while we were waiting, he had her latest cat scan faxed over. We were called back in and he took another look at her eyes. I'm thinking well do you know what the hell is going on or what? He says well the eye itself is fine, the optic nerve wasn't damaged from the pressure, blah blah blah The eye looks great and is healthy. Ok, but does this mean she can see? Well he said she could possibly have a visual impairment, but if she does it has nothing to do with the eye, it has to do with the way the brain processes the images her eye is seeing. The eye is essentially like a camera lens it takes the pictures and the brain deciphers what the "camera" is seeing. The hydrocephalus might have done damage to that part of the brain. So his advice: go see a neurologist. So basically I have no answers. Then again he was using huge medical terms and I didn't understand half the words that came out of his mouth. But this is what I got from it, Josh too. While he was explaining everything to me he mentioned that he had the results of the cat scan. I said well I 've been waiting for the results is it normal? He told me that I should talk to her neurosurgeon about that. So I'm freaking out thinking something is seriously worng, so I said well I want to know what it says. He told me it said something about the collapse of the ventricular system or something to that effect. I had read up on this before and read that this can happen in the case of over draining. This was the reason he ordered the scan in the first place, because he suspected over draining. I asked him why they wouldn't call me with results like that, he said it could be that he just wasn't planning on doing anything about it, but told me I should call them anyways just to be sure.
When we arrived home, I had Josh call Dr. Wilson to see about the cat scan. We called at 4:30 which is a half hour before they closed. Josh explained the situation to the nurse, and snapped at him telling him I know nothing of this, I don't know what you're talking about. She said she would have Dr. Wilson call us back. Well they never called us back, so Josh called them first thing in the morning, and a different nurse returned the call, and told us Dr. Wilson told her to tell us the cat scan was quote unquote "perfect" It was exactly how he wanted it to look. So I'm assuming the stuff that was on there is no big deal. Again, I am no doctor so I guess I just have to trust what they say.
So as you all know the past couple of months there has been concern for Lilah's eye sight. The main reason for this is the fact that she hasn't been tracking objects, and her eyes are always shaking all over the place so it seems like she is having a hard time focusing. Well I am happy to report that in the past three weeks this has changed dramatically. I noticed her eyeing a toy when I had her on her little play mat that my friend Tammy had given me. It has a big mirror dangling from the middle and a couple big hanging toys on the side. I wasn't sure if this was a coincidence, but then I saw her reaching and touching the toy. She started smiling and wouldn't stop! It was so cute, and I was so proud of her. The next thing she noticed was the mirror, as soon as she saw her refelxion she let out a big grin and was cooing non-stop. My sister was here and she saw it too. We couldn't believe how cute she looked. Ever since then the second I put her on it she starts to smile and coo. The following Wednesday I showed Susan what she was doing and she was absolutely thrilled. This is the first time she has actually witnessed her focusing on something and we could tell she was looking at her reflexion and responding to something visual instead of just sounds. Since the mirror is directly above her, it keeps her head at mid-line (looking straight ahead) which is what we have been trying to do for the past couple months. She told me this was really great to see. It pretty much proves that she's not completely blind. I mean it doesn't tell us how well she's seeing but at least we know she's seeing SOMETHING. Towards the end of her therapy session, she started getting real fussy, we couldn't calm her down. Well Susan placed her on her mat and she instantly stopped crying and let out a big grin. Susan said in her 30 years as an OT she had never seen a baby respond so happily to one of those play mats lol She hasn't made too much progress being on her tummy, she still hates it, but she is holding her head up better in her bumbo, and tolerating her time in it much better. I finally feel like I can see a vast improvement in her, and it gives me even more hope for her future than I already have. On a sad note, Susan, her OT, is leaving us. She is going on medical leave indefinately. I have grown so close to her in these past four months, and feel like she has helped Lilah tremendously. I am going to miss her a lot. She told me my new OT is a woman named Amy. She told me if she could have hand picked her new OT she would be it. She assured me that I will like Amy even more than I like her. I guess she is fairly young and has two small children, and Susan thinks I will get along good with her. I am going to meet with her next week.
After much thinking, and much advice from countless people involved in Lilah's care, I have decided to apply for dissability for her. In the past I felt like this might be a crutch, and would keep her from pushing herself and by applying I am somehow admitting she is going to be disabled lol Then her nurse told me that she knows parents that file for dissability on their premature infants, and get approved. She said especially since we are going through financial hardships right now, any little bit will help. So I finally relented and filled out an application and did an over the phone appointment. To say the application was long and tedious would be an understatement. I had to give names, addresses, and phone numbers of all her docs. I had to put what she saw them for, when she last saw them, when she was seeing them again. What treatments they provided.
Dates of visits, hospitalizations, cat-scans, ultrasounds. I had to list meds she was taking. I could go on and on. Anyways they said I should recieve an answer in about 4 to 5 months. Well I think that prett much sums up the past couple weeks. I want to end this by saying September is National Hydrocephalus Awareness Month, and there is so many people who have never even heard about this condition ( I was one of these people), we need to spread awareness and bring more attention to hydrocephalus, here is some interesting info I would like to share:
The National Institutes for Health, which controls most of the federal funding for these types of conditions states that the number of people who develop hydrocephalus or are currently living wiht it is difficult to establish since there is no national registry or database of people with the condition. However, experts estimate that hydrocephalus affects approximately 1 in 500, which makes hydrocephalus as common as Downs Syndrome or Juvenile Diabetes, yet the publis is largely unaware of the condition.
Facts about Hydrocaphalus
Approximately 1 million people have hydrocephalus in the U.S.
There are believed to be 180 different causes
There is no cure and very little research. The NIH spends 60 cents per person with hydro per year compared to 300 per person per year with juvenile diabetes though the prevalence of the disease is the same.
The standard treatment, a shunt, was developed in 1956 has a 50% failure rate after just two years which is the reason why so many have to have multiple brain surgeries just to stay alive.
60% percent of children with hydro are not independent as adults and require assistance. (this is the first time I've read this stat, so not too sure on the accuracy)
50% percent of children with hydro score 80 or below on standardized intelligence tests. (same wtih this one).
It costs the United states 1 billion per year in health care costs to treat hydrocephalus.
I hope someday we can increase the publics awarness and raise funds for research, so spread the word!!
