Molly tells their story of the fears and triumphs of Kellys first years.
Please read on..........................
My pregnancy went well, as did my first two, with the exception of catching a very bad cold in August, which went into pneumonia. My doctor did allow me to go on an antibiotic and cough medicine. Once that cleared up everything was back on track.
Kelly was born a healthy little girl on 12/12/95. Her first pediatrician appointment was when she was one month old. During that first month both my husband and I noticed that Kelly's right eye turned in quite a bit, although friends and relatives told us that was common in newborns, so we never got overly concerned about it. Actually, I remember feeling bad for her sometimes, as I thought she was seeing two of me instead of one. Well,
at her one month check up the doctor seemed quite concerned about the "way" Kelly's eye turned in and wanted us to see a pediatric ophthalmologist as soon as we could. She also gave us the bad news that Kelly had a minor heart murmur which she would keep a close monitor on (which has completely disappeared as of August of 97). At the time I thought the murmur was more to be concerned about than her eye turning in......boy, was I wrong!!! The
pediatrician was also concerned about Kelly's head circumference, which was at the 5 percentile. She then set us up for a CAT scan a few weeks later, which were negative, thank goodness!!!
Our first appointment to the PO was about two weeks later. It didn't take the doctor long at all to give us the bad news; she was born with her right retina detached and had no vision what so ever in that eye. She called a retinologist in to confirm everything. They were a little concerned about some scar tissue on the edge of the other eye. We were told that the scar
tissue had the potential of pulling at that retina and possibly detaching it too. They diagnosed her as having FEVR (familial exudative vitreoretinopathy), which is a hereditary eye disease. No one in either of our families ever had eye problems, Kelly was definitely the first. We then felt our next step would be to go for a second opinion. Our pediatrician made an appointment for us down at Wills Eye in Philadelphia, which was made for only a few days later.
The retinologist at Wills Eye agreed with the diagnosis of FEVR, but he seemed more concerned about the left eye rather than the blind eye. He then set up a EUA (examination under anesthesia) for 2/16/96. Kelly was 2 months old for her first EUA. The exam confirmed that the retina in the right eye was completely detached and the eye was micropthalmic, it also showed that the retina in the left eye had dragged a bit, although the retina was definitely attached (thank heavens). At that time the
retinologist could not confirm the FEVR, as Kelly did not exhibit all the entities that go along with it. As a matter of fact they couldn't pinpoint a definite diagnosis. He was very worried though about the good eye; whether she had any vision or what kind of vision it was.
At 3 months of age, during one of her many routine eye exams, the doctor told us there was a cataract forming and glaucoma had set in as well. They started her on Atropine drops to control the glaucoma, which has worked great, even at the present time.
The next few months were like a nightmare. We always had the worry whether Kelly could see at all. In fact, we were very anxious for Kelly to grow up faster than ever, just to confirm if she could in fact see anything. I remember the first day she picked up a cheerio........WHAT A GLORIOUS DAY!!! Then once she started crawling we saw that she didn't bump into furniture........another step in the right direction.
Over the next few months, Kelly continued seeing the retinologist at Wills every four weeks. She also was seen by one of Wills' PO's (to keep a check on the glaucoma) and a geneticist who checked her for any type of syndrome, etc. (none, thank heavens). The retinologist was always concerned whether she would be on target for her milestones, but so far she has kept up
wonderfully and that is so much to be thankful for!!!
At the age of 15 months Kelly had surgery to move the null point of her nystagmus in the good eye, due to a 30 degree left face turn that she was exhibiting. They also did an angiograph which noted an area of atrophy on the retina of the good eye. The doctor assured me this "blind" spot would not interfere with her vision. I have to admit, Kelly gets around just like any other child her age (more to be thankful for). She does seem to
have a problem seeing far away, but the PO did tell us she was nearsighted due to her retina not being perfect in that eye (approx 20/100 - 20/200). We did ask the PO about glasses, even for the purpose of protection for the good eye, but he doesn't believe in putting glasses on kids until 3 1/2 years of age (??).
We recently switched doctors, as the retinologist at Wills Eye took a leave of absense for at least a year, and the doctor filling in did not impress us. Anyhow, Kelly is now seen down at Wilmer Eye in John Hopkins (Baltimore), which is a 3 hour trip, but well worth it. The first thing the new doctor asked was why Kelly did not have a pair of glasses with polycarbonate lenses to protect her good eye, which was obviously her first
suggestion. She also asked if she had any DNA testing to rule in or rule out diseases (that was never even suggested before). She was also pretty adamant that Kelly have a scheral shell for the micro blind eye, as it has started to get pretty noticeable now that she is getting bigger. Due to her super sensitive cornea, the doctor suggested a conjuntival flap before getting fitted for a shell, so 6/2/98 she had that procedure done,as well as an EUA, her visual acuity measured, and blood drawn for DNA testing.
Thank goodness everything looks the same in the good eye as her reports from the last EUA done in March of 97 as well as exams done after that. The doctor also gave us a prescription for a lense for her glasses, to help give her better vision in the good eye. Since getting the glasses, we really can't tell if they help much or not, but they don't hinder her at all; she still runs, jumps, climbs, etc. If anything, I have noticed she
doesn't pull her books real close like she use to. As far as seeing better far away, I'm not so sure yet. Her next visit the doctor wants to check her acuity by having her read a chart (hopefully she'll be cooperative).
As of the present time, we are scheduled to see the doctor 7/15/98 for followup on her flap. If in fact the flap is healed completely, then we move on to the occurlarist for Kelly's mold and shell to be done. We are also waiting on the results from the DNA testing, which could take months, so I guess we'll have to be patient. If I had to make a prediction, I would say that all of Kelly's eye problems are due to a "deformity" and not
any type of hereditary disease, but that's because neither Rich nor I had any subtle hint of FEVR in our eyes and no one in either of our families has had any type of problem with theirs. We're just so thankful that Kelly can see, even if it isn't perfect. She certainly doesn't let it hinder her in any way.
We recently switched doctors, as the retinologist at Wills Eye took a leave
of absense for at least a year, and the doctor filling in did not impress
us. Anyhow, Kelly is now seen down at Wilmer Eye in John Hopkins
(Baltimore), which is a 3 hour trip, but well worth it.
The first thing the new doctor did was suggest a conjuntival flap and scheral shell for the
micro eye, which she had done 6/2/98. The flap was done due to her super
sensitive cornea. She also had an EUA, her visual acuity measured, and
blood drawn for DNA testing. Afterward the doctor did gave us a
prescription for a lense for her glasses, to help give her better vision in
the good eye. She hasn't cooperated in reading a chart since she received
the new glasses, but they certainly don't hinder her at all; she still
runs, jumps, climbs, etc. If anything, I have noticed she doesn't pull her
books real close like she use to. As far as seeing better far away, I'm not
so sure yet. After 6 weeks the flap was healed and she finally had her
mold done and the shell made. It came out beautiful!
It's been seven weeks now since the shell was put in and we haven't had to take it out once
yet:) Kelly has no irritation at all and seems to be very comfortable. She
absolutely hates when she has to get a drop in her eye and gives us a
really hard time, so we're quite happy we don't have to take the shell out
(unless, of course, she gets something behind it that we would have to).
According to her ocularist we won't have to take it out until it's time to
get it cleaned and polished, which is approximately every 5 to 6 months.
We are still waiting for any results on the DNA testing, which could take
months, so I guess we'll have to be patient. If I had to make a prediction,
I would say that all of Kelly's eye problems are due to a "deformity" and
not any type of hereditary disease, but that's because neither Rich nor I
had any subtle hint of FEVR in our eyes and no one in either of our
families has had any type of problem with theirs.
We're just so thankful that Kelly can see, even if it isn't perfect. She certainly doesn't let it
hinder her in any way. She's our little precious little girl!!!
There are a few different ways to conatct Molly and Rich. Try through theirPersonal ICQ page, or by regular e-mail.
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