Update

We have a wonderful pediatrician who is pleased with Amber Joy's progress. In the time she's been home, we have switched from formula in bottles to cow's milk in sippy cups. We transitioned from bottles fairly easily and the nighttime bottle that had me worried, was really no problem. She is sleeping through the night most nights, she puts herself to sleep in her crib, and she's transitioned to one nap instead of two. She is communicating by mimicking sounds (uh-oh, dog sounds, smacking her lips when I say, "are you ready to eat?"), and does have three signs: please, all done, and more. She loves bath time and all kinds of foods: avacado, pasta, peas and carrots, and grilled cheese sandwiches are among her favorites. She did have two positive tuberculosis skin tests because she had the vaccine in Taiwan, so we are on the medication to prevent TB for a total of nine months. It's a daily pill that we crush and put in applesauce. She's tolerating it well. She's almost 16 lbs. (only 1.5 lbs at birth), and she will probably be walking very soon. She loves her push toys! She is extremely busy and is crawling on hands and knees now (she used to be an army crawler). Her hair and teeth are coming in (finally!) and we are going to the beach with my parents in July and can't wait to watch her discover the ocean.
We have seen several specialists to deal with the issues we knew about from Taiwan. She was diagnosed with retinopathy of prematurity which is just underdevelopment of her retinas because of her premature arrival. We have seen an opthamologist and retina specialist and for now, we have opted out of doing anymore diagnostic procedures since she is not having any trouble. From what both doctors have seen, her eyes are perfectly normal. She will probably need glasses later for astigmatism, but other than that, she is good.

We have been to a pediatric cardiologist to address the report from Taiwan that she had an ASD (atrial septal defect, or hole) in her heart. The cardiologist says that there is absolutely no problems with her heart and we have been cleared!

The last big issue has been her hearing. In Taiwan, they did some basic hearing tests and she failed them all. This just means that there was no response. But it is very clear to us that she can hear some things. She hears us call her name and turns to look, she hears me sing to her in the car, and has begun to vocalize quite a bit. After some frustrations with audiologists and Ear/Nose/Throat doctors, we finally got in to see a Pediatric ENT today who says she does not have fluid in her ears, so she most likely does not need tubes. However, he is going to schedule us for an outpatient procedure where Amber Joy will go under general anesthesia and have what is called an ABR (auditory brainstem response). It is going to give us some conclusive data about her hearing and will most likely result in hearing aides. We are excited to finally be moving forward with a plan for her so that her speech/language development can continue to improve.

We are also working with Tennessee Early Intervention specialists and have a teacher who comes to our home twice per month to work with Amber Joy on development issues. The teacher has been consistently impressed with how fast she learns, her attention span, and her ability to initiate interaction. Amber Joy loves books and I've found her in her bedroom "reading" books on her own several times.

She will be starting a Mom's Day Out program two days per week in August. I think it will be great for her to socialize with other kids and it's a wonderful center, located at the church where we've been attending.

We appreciate you all so much and cherish your prayers as we continue to get the help our girl needs to give her the best start in life.

Hoping you all are well,

Stephanie, Justin, and Amber Joy

Comments

  1. So happy to see an update reporting that all is going so well with your beautiful baby girl! She's just beautiful! (((HUGS))) from RI!

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  2. She is getting so big. It sounds like she is doing so good with things. Praying that you get some conclusive data about her hearing.

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