THE DIAGNOSIS
We just went to the opthamologist for Serena's eyes. The diagnosis was worse than we thought - her vision is severely limited & she is extremely nearsighted (I mean EXTREMELY - like blind for anything far away). She has a long list of vision problems that exceed just poor vision (including her eyes shaking constantly). Basically, she is almost blind, except for about 2 inches from her face.
MY VENTING
Now, here is my venting. The doctor said that most of her vision problems could have been fixed if she had worn appropriate glasses as a child. Because she was neglected for so long, she will have to live a life with extreme vision loss & she is too old to be able to correct her eye shaking. I just want to SCREAM. I am so mad - this could have been prevented so easily!
Unfortunately, the damage was pretty much complete by the time she was about 7. Her brain is now trained to think that she is blind. So frustrated & mad that this happened to our girl!!!!!
GOOD NEWS
The good news is because she did wear some glasses for the last year & half, her vision hasn't deteriorated to complete blindness. So, I am thankful that she had care for that time period.
Her current prescription for glasses is not quite right, so she is getting a new prescription & the doctor highly recommends contact lenses instead of glasses, as they will help her see a bit better.
Serena was accepted into a program at the University of Houston & they will be working with her doing vision therapy to help her learn how to use what vision she does have. She is working with 2 vision therapists at her school as well.
Also, the doctor says when she is about 20 years old, she may be eligible for an intense eye surgery that may help restore some of her vision. We won't know until she is older & how her eyes do during the next few years.
Hopeful that with therapy & new contacts (with a correct prescription) our girl will be able to see better!
There are so many "if" stories with our kids. If only they could have gotten help sooner. If only their ear infections had been treated. That's one of the reasons why I love New Day. I'm thankful that there is some good news with the bad. And I totally understand your need to vent. You have both my ears...er, or my eyes in this case. :)
ReplyDeleteWow! I would want to vent too! How sad to think she could have been spared some of her current problems with the proper care! I pray that she responds well and that her brain will be convinced that she can see and respond accordingly!
ReplyDeleteWe have a similar situation with our little girl. Her opthalmologist said that her first couple years were essential in helping her optic nerves to be trained. Unfortunately she didn't get the help she needed and now, it is what it is for her. We aren't exactly sure how well she can see now because she is only 3, but I think she sees similar to Serena. She gets around great, but holds things close up to see and stands with her nose almost touching the tv to see it :( it breaks our hearts, but she is such a sweet little girl and so determined.
ReplyDeleteShe has corneal scarring on both eyes, nystagmus, and her blind eye wanders.
Just saying I understand exactly how you feel. Serena has the best from now on!
Welcome to the world of foreign adoption. This is the sad and frustrating reality of adopting children out of system such as China...there life story, medical conditions, etc are never really what they say it is. Even with a NSN, things aren't always what they put on the paper. It breaks our hearts as parents because we know they have suffered and we weren't able to protect them, however our gift is that we can be there and protect them from this day forward. I am so glad she is with your family because she lives in a city has one of the best medical centers in the country. She has wonderful parents and has so many resources that she will be able to overcome those vision obstacles! (((Hugs))) to you
ReplyDeleteThat is terrible! There are so many children that have medical conditions that could be drastically changed by early intervention.
ReplyDeleteCaden has nystagmas (dancing eyes) and I am assuming low vision. Who is your eye doctor?
I am glad you got her home and now Serena has access to top notch medical intervention!
Nicole, we took her to Dr. Paysse at Tx Childrens Opthm. dept. She was good, but could offer little hope.
ReplyDeleteThe Univ. of Houston has an Eye Institute that does vision therapy - Serena has an apt in 2 weeks to see what additional therapy she could benefit from. You may want to take Caden there as well - I have heard a ton of wonderful things from Serena's Vision therapist at her school.
Heartbreaking that her vision could have been corrected :( Serena's vision sounds about the same as Hope's-- nystagmus and severely low vision (20/200- legally blind- in her GOOD eye), and yet it doesn't stop her. She gets depressed sometimes that there is no hope of it getting better, but her low vision doc and VI at school have figured out great tools to help her. Her favorite is the monocular and unfortunately it took us 6 months to figure that out. If you can take a translator to the low vision appt, that might help, as ours asks A LOT of questions.
ReplyDeleteWe're praying that Serena gets all the help she needs from here on out, and praising God that restoration is fully possible with Him! I bet she will be able to improve more than the doctors think...they usually don't factor in the help of the Holy Spirit and the love of a family into the treatment plan!
Wow! You vent very "sweetly"!! That just shows what a sweet spirit you have! We are praying that she responds extremely well to the current treatment available. God can make up for anything she missed out on!! I will be praying that is the case! We miss you in class!
ReplyDeleteThis is very frustrating, esp as a parent, I feel your frustration! I've enjoyed reading up on your expanding family on your blog! Keep it up!
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