We've had a week of doctor's appointments.
We started off Monday at the cardiologist to have a re-check since we ditched three of her heart meds. She's doing really well. So well, in fact, that our kiddo is MEDICINE FREE! Dr. Colvin didn't see the need to continue the Lasix that she was still taking, so he said we were done . . . for now. When he did the ultrasound, we could see that there's still some backflow coming back in once the blood is pumped out, but he didn't think that it was enough to worry about for the time being. He also checked her liver to make sure that there was no swelling there, and we got the all-clear on that, too. We'll go back once more in six weeks to re-check, but he expects everything will be fine.
Today we went back to the International Adoption Clinic for a follow-up. Things have gotten kind of frustrating the last few days with Maya's eating and drinking, or the lack thereof, really. We've been trying to get her used to a spoon since we left clinic the first time. For the first week, things were really good and we believed that we were making some headway. But, things got frustrating and she really began spitting more out than she took in. We were never really trying to make a 'meal' out of the practice runs, just trying to get her desensitized to objects in her mouth. The good thing is that her gag reflex finally went away. When we first brought her home, and when we were still in Bulgaria, if anything even touched her tongue other than her bottle, she'd instantly gag. She's not doing that anymore, but she's also STOPPED taking her liquids. We were having to give her liquids through a syringe, but the last three days, she got to where she would get really upset, and she'd just hold it in her mouth. Most of it would eventually come out. Frustration doesn't do justice to what we were feeling. We knew she needed to drink, especially before the appointment today. We were going to try and get her blood drawn since we weren't able to do it last time, but it was a no-go again. This is still due to her lack of fluids and a large part is also due to her low muscle tone. Your veins are held in place by your muscles, and when there's no muscle to hold them, they kinda just flop all over the place. That makes trying to get a stick very difficult. We're gonna try that again in three months, hoping that between now and then these issues will be resolved somewhat.
Back to the liquids and feeding issues . . . Dr. Chambers has told us just to stop trying to do the synringe method. Since we're all getting frustrated with each other, she said it just wasn't worth it. She's peeing well, so she's not dangerously dehydrated. We had a session with the occupational therapist today (who also happens to be a feeding specialist) and she worked with her a lot on the spoon. She also suggested that we try and just see what would happen if we just put straight formula in her bottle. Do you know she took that stuff like a champ out of that bottle? She ended up spitting up a good bit, but she got it in! The plan now is to take the cereal out (since we really only used that to make the bottle thicker . . . there's really no nutritional benefit there) and just put formula and baby food in. I tried that with her once we got home, and she did GREAT. She did spit up some, but, by golly, she took it, and that was the goal. I also tried working with her on her spoon feeding. It wasn't anywhere near perfect, but we got through it and I think she kept a good bit in. The problem is in swallowing. With a bottle, she can't help but swallow. It all comes from that little natural reflex we have as babies. But with a spoon, its a different process, different feeling, and a different method that's completely foreign to her. She doesn't even really know what in the world is going in her mouth, because all she's known is the feeling of that bottle nipple. So, any progress is good progress, and today we've made an teeny-weeny amount of progress.
Maya also had an audiology appointment today. Normal hearing tests would show that sound is acknowledged between 0-25 decibels, but most of her results came in a 40-50 decibels. That may seem a little worrisome, but the audiologist thought that those results came in like that because that's where a child at her developmental age (6-9 months) would score. The computer-based test that evaluated her cochlea looked fine, and they relied heavily on that, too.
We'll keep seeing the feeding specialist in Birmingham until we get this resolved. Its inconvenient, its costly, its frequent, but we vowed to do whatever it took to take care of her. We want the best for her, and as far as this issue goes, this is best.
We have a meeting with Early Intervention next Thursday, so we'll see where that takes us with her other therapy needs.
Keep praying for us. We all need understanding, patience, and GRACE to get through this 'stuff'. Its not all fun and games, but we knew it wouldn't be. Everything else is great, so we can be thankful that we only have to really focus on one big problem for now.
Love y'all!
Paige
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