During the exam when the broken stitches were fixed, the doctor checked the pressure in her eyes again and found that there wasn't a drastic change with the new medications, but also noted that there is no evidence of any damage to her eye (thankfully). He explained that children are much more able to handle the increased occular pressure than adults or the elderly because their blood vessles and are more plyable. Which basically means that an elderly person with the same pressure readings would have experienced damage to their eye and thier vision would be comprimised because of it. Thankfully this was not the case for Emily right now. He decided to up the frequency on the one eye drop to see if that would make a difference.
Emily's Christening was on April 13th. It was a very special day for her and she was such a good girl in church. It was very nice of our Pastor to mention her in the prayer and concern part of the service. He explained briefly about her condition and a special prayer was said for her continued healing and improvement in her vision. God was smiling down on her that day, we just know it.
On April 14th she had another exam under anesthesia to remove her stitches. Her doctor could not remove all of them because the ones that had just been replaced were not ready to come out yet. The pressure was tested again and found to be lower, but not quite low enough. He decided to add an oral medication called Diamox. If that didn't work he said there was one or two other things that we could try, but we were hopeful that we wouldn't need to. Since the medication is a pill for adults with Glaucoma, it is not commercially available in a liquid form for children. So we had to have it specially made at a compound pharmacy. Emily didn't seem to mind taking it since it's flavored like tutti fruiti. She smiles everytime we gave it to her!
On April 17th she had an appointment with Dr. Morgan, her Ophthalmologist. He said that he was pleased with how the cornea's looked and confirmed that she is also far-sighted in the left eye as well. Her retina appears to be normal (which is great news) and overall her eyes look good. Although she is gaining a lot more control of her eye movement, often one or both eyes will turn in too far. I wouldn't say that she is cross eyed, but there are times when it is obvious that her eyes are not looking in the same direction. This can sometimes be corrected with glasses, which she will probably need. At some point in the future (a year from now or so) we will discuss the possibility of having her eye muscles surgically corrected, but that is not a huge concern right now.
On May 1st she had the remaining stitches removed. Her doctor said her eye looked like it was healing nicely. Because of the extra surgery and stitching during the initial transplant and the problem with the broken stitches, her left eye may take longer to heal than the right one did. The cornea itself looked good, but it was not quite as clear as the right one. The Dr. said that with time and additional healing it should eventually look the same as the right eye. The good news was that her pressure readings were much lower and within an acceptable range! We finally found a combination of medications that worked! That was one of my biggest concerns, so when he told us to continue with everything we were using, I was thrilled. When we left the hospital that day, it was like a huge weight was lifted off of our shoulders.
Finally...her surgeries were over, her stitches were out and her exams in the hospital were done. Now we could move on to the next phase of her treatment and begin to show her the beautiful world around her. She has been through so much in the first 6 months of her life, but she has been so strong and we are so proud of her!
Linda, a visual therapist, had been coming to our house twice a month to work with her and track her visual growth. At our last session Linda told me that she is doing very well and is showing improvement at each session. She is tracking a wide variety of colored objects up to about a distance of 5-6 feet. Although not all objects hold her attention to that distance, there have been a few so we know she can see at least that far. She is showing visual preference, which means that when given the choice of looking at two objects, she sees both of them but prefers to look at one over the other. She is also showing visual memory, meaning that when two objects are placed in her visual field and then one is taken away or hidden, she will look at one and remember about the other one and look for it. Both of these things are a great sign that her vision is improving and she is doing well.
We also had Beth from the Commission for the Blind come out and see Emily. They run their own early intervention program and can offer assistance, support and guidance to families of visually impaired children. She did her own evaluation of her vision and was really very pleased with her progress. I asked her if she had any experience with Emily's condition and she said that she only know's of one other case in the area, a child in Bergen county, but she personally has not worked with that child and has little information about the condition and how it will affect Emily as she grows up. Because it's so rare and there aren't many babies who have had the cornea transplant surgery, her future is really unknown. While she is doing well right now, the possibility of the donor cornea being rejected is always there. In reality she could be 4 years old and show signs of rejection, but we have to stay positive and believe that we won't have to ever deal with that. Beth told me that by far Emily is doing great and there are many parents of blind and visually impaired children who would jump at the chance to be in our shoes. So we really have to count our blessings and be thankful for the vision that she has. If she needs glasses to see, thats totally fine. At least she will be able to see. And we can't ask for more than that. Beth mentioned that she will be trying to get a few toys for her, ones that we can use to help her tracking ability and distance. And when we are ready to order glasses for her, she will be able to help us with that as well. She won't be able to provide help with every pair of glasses she will need, but any help we can get is wonderful. If anyone has information on any programs that would provide glasses for visually impaired children, please let us know. We know of the Lions Club, but have yet to really get information on how their program works or how to contact them.
On May 30th Emily saw her cornea specialist for the first time since all the stitches were taken out. The good news is that she does not need to be on the antibiotic eye drops anymore, so we can stop using that. But another medication is being added to the list instead. We've noticed that her left eye seems to appear swollen, but it's hard to tell from day to day whether it's the same or worse than 3 weeks ago. Originally the doctor said that it could be from the extra surgery on that eye, or just part of her condition. But because the left cornea still doesn't look as clear as the right one, he suggested using an over the counter saline drop to try and clear it up. He said that he's not sure why it is like that, but it's possible that when the stitches broke it caused something to happen and it's just not resolving itself. The new medication is called Muro 128 and is used for treating corneal edema...which would explain the swelling we see. It works by drawing out the fluid in the cornea. She will get that 3 times a day and hopefully it will clear everything up. She's only been on it for 2 days now and we can already see an improvement. Her eye doesn't look as swollen as it did before, so hopefully it's working. She won't need to go back to see her cornea doctor until the end of June...so we are about 1 month in between visits now...a far cry from when only a month ago we were going twice a week. When she goes next time, she will be sedated in the office so that he can test her pressure again. She will have to take a medication that will make her fall into a deep sleep. So it's like she'll be under anesthesia, but not really. (kind of scary for me) I'll be there with her the whole time and just have to stay for a little while afterwards until she wakes up. The doctor joked around saying that it will be like she's having the best sleep you could possibly imagine and that many parents ask if he can prescribe some of it for them! Hopefully her eye pressure will still be ok and we can just continue with what we are doing now.
Here is her eye drop schedule as it stands now:
Pred Forte (steroid) 5 x day Right eye - 6 x day Left eye
Cosopt (pressure) - 2 x day both eyes
Xalatan (pressure) - 1 x day both eyes
Diamox liquid (pressure) - 1 x day
Muro 128 (corneal swelling) - 3 x day Left eye
Dilation drop - 2 x week Right eye only
On June 5th she was going to go back to Dr. Morgan for another eye exam. I was anticipating that he would prescribe glasses for her, so pretty soon she would be able to see even better than she could now. I couldn't imagine how much her world was going to change. She was now 7 months old and her personality had really started to bloom. She was getting extra tummy time to strengthen her core muscles since she isn't sitting on her own yet, but hopefully she will soon. She had spent so much time in the car seat going back and forth to the doctors that she was really robbed of tummy time as a newborn, so she's got some catching up to do. She loves to blow raspberries, especially while she's eating her fruits and veggies! And we think she said "da da" the other day but we haven't been able to get her to say it again. She sometimes just says one "da" so I guess that's a start.
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