Here's how Anellah is doing:
Developmental: She continues to make GREAT progress. She goes to preschool in the mornings Monday-Friday and has lots of friends there. She receives speech therapy and is to the point now that we understand some of what she does at school based on what she tells us. She has a meeting coming up next week to discuss new goals as she has been in this program for almost a year now (minus summer months).
Craniotomy: She still has one lump on the side of her head that comes and goes but other than that she seems to be doing perfectly! The doctors aren't concerned about the bump except for cosmetic reasons and unless it begins to cause pain. It doesn't seem to bother her so we will just let it be!
Diabetes: It has been a BIG struggle to regulate Anellah's blood sugar ever since she was born. I feel like we are finally beginning to make progress though as, after years of trying, we were able to come up with a solution to one of her pump issues (and it was an easy fix, discovered on a Juvenile Diabetes forum!) She was also added to our insurance so we have invested in a continuous glucose monitor. It is a little pricey but is proving itself to be very helpful.
Liver: The possibility of a transplant or surgery is always looming however she had an ultrasound last week and her liver and spleen looked the same as it did last May. This is good news! She continues to take medication for her liver and has a greater risk of bleeding because her spleen is eating up platelets. But she seems to be in stable condition currently for which we are thankful. We also saw a hematologist (blood doctor) last week and she provided some useful information. She said Anellah may have increased risk of bleeding when she has a cold because the spleen enlarges but she will prescribe some medication that can be used on a short term basis if this occurs. She also taught me how to feel and measure the spleen so we can monitor it ourselves.
Kidneys: These seem to be doing ok!
Hearing: She seems to have some minor loss of hearing but remains very minor and was probably a result of months in the NICU. It doesn't stop her from loving music and being able to carry a tune!
Asthma: She had a cold in December that made me a bit worried but thanks to her inhalers and nebulizer we were able to stay out of the hospital.
I am extremely thankful for all of the doctors Anellah and I interface with. They are all very very kind and genuinely seem to care about their patients. I am also thankful that since Anellah is adopted out of foster care she has state insurance that pays for the cost of all appointments and the majority of her medications and medical equipment. We definitely would not have this luxury if she were our biological child.