Prior to this moment, the two younger ones were making music videos in the upstair hallway. So cute!
Is everything happiness and light? Much is but not everything. Sleep in still an issue. No night terrors now so we are in good shape but Minlan's night whispers (she talks softly to herself to get to sleep) is absolutely not working for the boy. Dec and Allura were up til midnight the night before last and last night Mommy spent an hour going back into their room and taking away privileges from the boys while looking sternly at Minlan. She did go sleep at 9 but I can't do that every night. Minlan is going to get her own big girl room this weekend.
The good is in how patient, smart, funny, and loving all three kids have been. They really work well together and they all work hard to be kind to each other and to play well. Each child has their own way of saying that they need our attention and we seem to be pulling off attending to each child's needs.
Yesterday, we were treated to a small miracle. The orphanage was kind enough to agree to use a memory stick for us when we asked if we could send one. We assumed they might download old photos from Minlan's files. We opened the file yesterday and couldn't believe our eyes or ears. It is a one hour video made by Minlan and her foster mommy! It is just breathtaking. Her foster mommy has Minlan in the red silk outfit sent by Nana and Bapa and shows Minlan going through her forever family photo album and taking about the fact that she likes Mommy's hair, that Mommy is pretty, that she likes her brothers, that she likes Quin's glasses, etc. She then sings a song in Chinese and takes us on a tour to see her bed. The next scene, only 8 minutes in, is a video of Minlan's 3rd birthday at her foster home with cake and presents. The camera was not held by foster mommy so we have her on camera too. It is priceless. I can't believe that her foster mommy put this together for us.
We have not yet watched the rest as it seemed to be what Minlan could handle and we don't want to stress her by accentuating things if she consciously or subconsciously is missing her foster mommy horribly. She must because she is/was clearly a great and loving nurturer. We are thinking through what we might send back to let her foster mommy know how much of a gift she gave Minlan to have raised her so well so far and how wonderfully Minlan is doing.
Back to the medical part: we had two medical appointments this week. Three really. The first was with the pediatric ophthalmologist. Dr. Epley, in Kirkland, was fantastic and definitely lived up to his excellent reputation. Minlan participated incredibly well. She sat through the whole thing, with playroom breaks, and at times asked to sit in the big chair alone and at times sat on Mommy or Daddy's laps. She was completely content and not anxious at all. She has clearly been through many eye exams.
Dr. Epley said he had a long list for us, as we expected. I had already noticed that she had had two cataracts not one as translated on the documents. That means that she has been going around without lenses in her eyes for years. Minlan's records show that she had bilateral congenital cataracts that weren't removed for 7 months. Dr. Epley explained that this was a significant period of visual deprivation such that her eyes became uncoordinated and developed a type of bouncing movement called nystagmus. Then the lack of lenses was not corrected with contacts or with glasses until she was already close to three years old. This lead to worsening nystagmus and to severe crossing of the eyes. Both are a sign of the optical cortex of the brain being uncoordinated due to lack of visual imput. He said it will be her biggest impediment to good sight over her lifetime but that it will improve with all the corrective measures he can offer.
The next issue is that her eye crossing needs to be attended to first. This will involve surgeries on both eyes on the same day to loosen some horizontal muscles and to tighten other. The goal will be to allow the eyes to be able to look forward. She supposedly had one such surgery in China but no one can tell what was done and whether it helped. The fact that her eyes are crossing all the time now, means that she is always seeing a double image. This doesn't work for functionality in life so the brain compensates by always shutting down an eye. This reduces development of the eye and the optical cortex. So, not only does she need surgery for the crossing but also daily patching for two hours switching back and forth between eyes each day (one day the left, the next day the right, and so-on).
The surgery will be at Swedish First Hill in Seattle on September 17th and she will be expected to go home that day. It will be under general anesthesia with a pediatric anesthesiologist and pediatric ophthalmologist.
At the time of the surgery, they will be able to get a good look at Minlan's anterior eye chambers. Sometimes, an individual's anterior chamber eye will not be sturdy enough to hold an implanted lens (the issue may be that it never developed the strength or that it was an issue with lack of lens for such a long time). If, at the time of the anti-crossing surgery, they think the anterior chamber will hold a lens (which is the ideal situation), then two more surgeries will be scheduled for subsequent dates. It would be ideal to have an implantable lens for far vision and then glasses would be required to assist far vision as well as for near vision.
If an implantable lenses are not a possibility, then it means specialized contacts beginning soon and for her whole life as well as glasses.
We also have to get Minlan to wear her glasses everyday. Right now, she has incredibly thick, heavy, inflexible glasses that came with her. The optician said that they can't be adjusted or they will completely break apart. However, as Minlan received these glasses between ages 2.5-3, and that was far too long to go without glasses in order to develop good visual pathways in the brain, we are lucky that she had any glasses at all. So, yesterday she went to Lens Crafters and picked out an adorable lightweight pink shiny metal pair. The lenses required are still thick and have to have an special kind of bifocal so we will have them back in 10 days or less. I can't wait! Minlan loved picking out her new glasses while Quin was fitted for his new pair and Mommy had hers repaired (smashed a bit in China).
So, as a synopsis: we have strabismus surgery booked for Sept. 17th for both eyes. Two more potential surgeries, we hope, for lens implants. Daily glasses. New glasses. Daily patching for two hours alternating eyes. Provision of visual stimulation daily. Plan to book an appointment with a low vision specialist to help with accomodations for home, future preschool, and learning.
The second appt day was with the pediatric adoption specialist Dr. Bledsoe. She said that Minlan has exceeded all expectations for everything. Minlan is larger, sturdier, healthier, cognitively exceptional, and better attached than children she sees who have been home only 1.5 weeks. Dr. Bledsoe was so happy with Minlan's growth since her last recorded data (she is now at 50th percentile for height instead of 30th and 80th for weight). Minlan demonstrated her excellent communication skills, excellent attachment to the family members, and even sang the ABC song for the doctor. The visit was really amazing. The only down side was that we had to have a blood draw for repeat of all the infectious disease tests done in China as well as to look for any lead levels and iron deficiency as these can be seen in adoptees. The blood draw was so sad! As soon as she saw the two people coming up to sit next to us in their white coats, she just started screaming and crying for me even though she was sitting right on me. It didn't stop until they were done but the lab did a great job and Minlan was easily consolable afterward. She is so brave!
The third appt was for the glasses fitting.
I have to share that at first, at the Ophthalmologist appt, I was in my Doctor Mommy brain and taking things in very easily and without deep emotion. Over the next few hours, my heart and brain were connecting all the dots and I was just overwhelmed with relief, gratitude and love for Minlan. Dr. Epley flat out told us that if Minlan had been in China much longer, with the length of visual deprivation she had experienced, she would be blind. She currently is partially sighted with potential for improvement. How much improvement, we don't know. We'll ask those questions and find out more over time. But a blind orphan in China has very little chance of a meaningful future. Now, we can help Minlan to maintain the sight she has an hopefully improve her situation. If things can't be improved a lot, she will still fare well due to the accommodations and opportunities available to Americans with low vision. She will be able to develop her passions, follow her dreams, and participate fully in the life she desires. I am so grateful to God for bringing her to us as our amazing daughter.
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