Alaina had an ophthalmology appointment back in late February. Her ophthalmologist was very impressed with her vision. She was 5 months when she had her 1st eye check up, she was not making any sort of acknowledgement, she could barely make eye contact. Last month she was 11 months when she had her 2nd eye check up and she has improved tremendously. So parents don't lose hope! A lot of stimulation and hard work helps as well, just don't lose faith so quickly. Her ophthalmologist recommended for me to put a patch on her stronger eye (left) and work on improving or making her weaker eye (right/since she can hardly see out of it) and making it stronger! : For about 2 hours a day. I honestly never knew how bad her right eye was til we tried the eye patch. It really made me sad seeing her this way because she kept running into things, she didn't want to move, she just wanted to stay in one place, she always wanted me next to her or holding her hand. She was afraid, but we kept trying at it, she kept trying to take it off but we kept working on it. The first day we did 45 minutes because she kept getting frusterated. Which is okay for the first time, just got to boost it up to another hour atleast or try again later to get those 2 hours in. Another cool trick if any parent is interested in trying the eye patch is putting it on while they nap. I tried this with Alaina and she did great. Putting the eye patch while she was awake made it easier for her to know it was on and easier for her to try to take it off.
So when I tried this on Alaina, when she woke up she had no clue it was on. She went about crawling, playing with just a little caution but she did even better, and she had it on for the whole 2 hours when we did it this way. I would advise those parents to ask your child's opthomologist if it's a good idea to try this out! Good luck everyone! :)
5 Comments
Shannon
7/2/2017 07:16:04
Patching....sounds so easy - until you put it on your precious little one. Our 12yo has SOD and we patched from 6 month until 3. Reading your story brings me back to those days with tears in my eyes. It is so difficult to see them like that. Our daughter would also go from a fun-loving, bouncy little girl to a regressed and sad child instantly when you would patch her. For 3 long years we did it every day! But it saved her eyes and made them stronger. Consistency is key! Make sure you stimulate her and make it just another part of the day. Routine will begin to form and it does get easier, albeit just a little. Patches have come a long way from our days and now you can get them all fun and fancy. We tried to make some fun out of our boring tan patches and would let her color hers.
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Melissa
9/2/2017 14:05:11
I completely agree, it sounds very easy but it's a different story when actually doing it. I applaud you for doing an amazing job and being consistent w your daughter every single day. Alaina has been doing very good w her vision, and is currently going to wear some safety glasses but they are prescribed, just to protect her eyes since she's always running into things. That's awesome you're in Houston as well! We should keep in touch!
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Brandi Howell
9/2/2017 13:29:04
I am a 38 yr old mother of a 7 yr old girl with SOD. She has NO vision at all. She does a growth hormone, levothyroxine for thyroid, and hydrocortisone for cortisol. She also takes melatonin as her body doesn't produce much serotonin to keep her sleep pattern consistant. She also has seizures and severe mental delays. Despite all this, she has developed a lot in many areas, and in some areas, she is way behind. But her smile and giggle...omg! Melt my heart!!! Thank God for my precious girl every day, just the way she is!!! If anyone wants to talk, please feel free to email me at [email protected].
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Brittany and (Trinity)
4/14/2018 18:26:36
Hi. My name is Brittany.
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Melissa
4/18/2018 13:23:01
I am so sorry to hear this... I can only imagine what your going through. Hang in there, God doesn’t give hard challenges to those he believes can’t handle them. This was one of the most encouraging quotes that got me through my hard time with my daughter. You will get through this... Please feel free to email me at [email protected] for any personal questions! ❤️
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Hello, everyone, for those who are coming across my blog for the first time. I am from Houston Tx. My daughter was diagnosed with hypopituitarism, adrenal insufficiency as well as other deficiencies. There are so many things that result from these diagnosis. I made this blog to share my experience. After the years I have learned that these conditions are more common than I thought. You are NOT alone. WE are not alone. |