Maia update

I've been saying that I was going to do an "update" for a while now and since it's still quiet this morning, thought I would take a few minutes before getting ready for church to do that. So... how is Maia doing? I'll start with the physical stuff. I know we've posted bits and pieces as we've went along, but just to summarize. We've seen all the doctors at the Spina Bifida clinic, had lots of tests and met with therapists.

• Neurology: Maia is doing great for a child who has spina bifida. Her MRI shows an Arnold-Chiari malformation which means that her cerebellum and brain stem are pushed downward. This affects her balance. At times, she is pretty unsteady. Her shunt is fine and seems to be working well. The EMG showed that she has a predisposition towards seizures so she will continue on anti-seizure medication as a preventive therapy. At this point, there is nothing she needs other than follow up with the neurologist every 6 months or so.
• Urology: Maia has vesicoureteral reflux - basically, her bladder muscles are too stiff and urine flows backward into her kidneys. It also causes her to be incontinent. The reflux has the potential to damage her kidneys. Thankfully, her tests show healthy kidneys. The urologist started her on medication which will relax the bladder muscle as well as a prophylactic antibiotic. We are cathing her four times a day with the goal of keeping her dry between times. Not happening at night yet, but we are making progress during the day.
• Cardiololgy: Absolutely no heart problems!
• Ophthalmology: Maia has strabismus - crossed eyes. Her eyes work independently of each other, although the vision in each is good. Her right eye is slightly stronger than her left eye so we are patching the right eye for 4-6 hours/day to strengthen the left one. Maia will see the eye doctor in a few weeks and we expect that he will schedule surgery shortly after this to correct the strabismus. She may need to wear glasses for a period of time following - we're not sure.
• Audiology: Perfect (but selective - lol) hearing.
• Physical Medicine/Rehab: Evaluations by physical, occupational/speech therapists all say she is doing great. Yes, she is delayed for her age but with play and the stimulation/attention she is now getting, she will catch up. No braces or orthotics are needed. Maia's hip joints are loose so we need to encourage her to sit with her legs in front of her or crossed when she is on the floor.

So physically, all is as good or better than we expected knowing the medical issues she had when we adopted her. It would have been great if there were no bowel/bladder issues, but these affect nearly every child with SB so it was not unanticipated.

Emotionally/adjustment wise, Maia is also doing well. She is slowly becoming more affectionate, occasionally giving kisses when prompted. Still doesn't like to be held or cuddled, but will come up and lay her head on our knee sometimes. She does love her grandparents VERY much! Maia is making more eye contact with us and has started to notice when Mark or I leave her - good signs of attachment. Her lungs are fully developed - lol! There is a lot of testing and screaming that goes on in our house when she does not get her way. It's hard for a girl who has to learn what's acceptable behavior in her new family. Although I don't like the temper tantrums, I recognize them as a sign that she trusts us enough to let that behavior show. And hopefully, they will decrease over time as we are consistent in our expectations. Most of them have to do with food and toileting. Verbally, she has about 25 words of English which is awesome! Her Russian vocabulary was only about 10 words so the fact that she has more than double that in less than 2 months of being home is wonderful! And her comprehension is excellent - she is understanding many simple instructions such as putting her silverware in the dishwasher after meals, throwing napkins in the garbage. Need to work on her ability to dress/undress herself, but it will come in time.

Some days aren't easy, but that's parenthood. I am thankful that God gives us enough good days that they sustain when those challenging ones come. We love our girl and it is fun to see her grow and blossom!

Ok... gotta run, I'm cutting it close in getting ready for church.

Dancing Girl

 Sweet pea!