Wednesday, January 11, 2012

Update on Aria

Since Aria's many medical appointments, we have had great reason to rejoice in the many ways that her health has exceeded what we had expected. We have been getting back the results of her many blood tests as well as her stool tests. More reasons to rejoice - thus far everything but one has come back normal! The only issue that has been verified is one we were made known of in her referral; Aria is anemic. This makes sense with her leaky heart. And the good news is that she is not severely anemic. An iron supplement can help her levels get back to normal.

As far as other aspects of Aria's development and health, we have realized that Aria has a weak body, to say the least. She is very unstable on her feet and often falls down. She struggles going up the stairs. There are many tasks that should be quite simple for a child even younger than she is that she cannot accomplish, most involving areas of strength. The cardiologist suggested that we may need to see a neurologist and orthopedist if she continues to struggle. We've also had her see a physical therapist this past week. This was an informal visit with a family friend who is also by profession a physical therapist, Christie Klemish. After she had read some of our blog when we were in China, Christie saw a lot of red flags in the physical behaviors we described that indicated to her that Aria would highly benefit from physical therapy. We saw Christie, as I said on an informal basis. After having Aria do some basic skills with her muscle groups, it was confirmed that Aria is quite a bit behind where she should be with her movement and muscle development.

One that really surprised me and I hadn't noticed in day to day activities is that Aria cannot hold her head up when getting up from a lying down position without it flopping back. In other words, her neck muscles are very weak. Christie shared with me that this is a skill we learn at about age 1 or even younger. Another area that she found to be very weak is Aria's thighs. This is not a surprise to us as we see it in her every day movement. However, what did surprise me was Christie's observation that Aria is completely favoring one leg over the other. And when I had Aria go up even one stair with her other leg, she simply cannot do it with just the strength of her leg alone. She has to use her hands or some other part of her body to help her up. With some exercises to help her work on various weak muscle groups at home, we are already trying to help her build on her areas of weakness.

After seeing Christie, we also know that seeing a physical therapist is pretty important not only for Aria to grow in her development, but also for Aria's safety. Aria is so wobbly at times that we truly do have concerns for her being around other children. For example, we have debated allowing Aria to join AWANA with her siblings (as she attends church on the weekends and enjoys it). However, if she is placed with her peers on such a high energy night, we are concerned for her safety. Chad and I have talked about perhaps requesting she is put with much younger children that may not be so much bigger than she is. And that may be a good answer at least during this time of Aria's life. Or the other option is to just wait until she grows stronger and more steady on her feet. That is the one we are opting for right now.

This poses the next question... why is Aria so physically weak? This question actually puzzled the cardiologist, who said her particular heart condition should not be the cause of this type of weakness. So what is it? Was it her poor nutrition and apparent malnourishment? Was it that at her orphanage, she was carried often and coddled? Many of the pictures they gave us show Aria carried. Given her size and her slow pace, this is an easy thing to do. Also, given the information we learned and observed firsthand about the orphanage staff and also what we see in Aria's behavior, we have no doubts she was catered to and given her way. We also have some pictures given to us of Aria as a baby, and she was put into a sort of wooden box to make her contained, similar to say an exersaucer but without the toys and perhaps without the need to use important muscle groups in her legs. (It's hard to tell from the picture.) We also wonder if she was given important tummy time as a baby to develop her neck muscles or other exercises like that. We do know she was left at the orphanage at 4 months old and was in poor health. Perhaps because of her poor health at that age, she missed many important milestones in her development and wound up skipping steps to the detriment of her body? Or it could be a combination of all of those things, or perhaps none of those things and reasons we may never know or are yet to find out?

We are left with many questions regarding Aria in a variety of areas. Oh, to have been a fly on the wall of that orphanage! We just may never know the answers, only to just deal with the consequences of her almost 4 years of being institutionalized.

We would appreciate your continued prayers over our little daughter. Some specific prayer requests we have are in the following areas:

*Health and development
- We pray that the hole in Aria's heart completely heals and that her hemoglobin levels increase. We also pray that her muscles grow in strength and ability. At this stage of the game, we just want her body to become more stable for her own safety and able to perform basic tasks with more ease.

*Behavior - Aria still exhibits hording tendencies. We find items in her "stashes" that belong to her but also to others. We pray that she will feel completely safe and secure so she doesn't feel the need to protect and hide possessions. Aria also has an overpowering personality, and her controlling tendencies can overwhelm particularly her brother, but also the rest of us to some degree. We pray for wisdom to know how to firmly handle these patterns of poor behavior that she has learned. Given we don't know how she was disciplined in the orphanage, we are still learning what disciplinary measures reach Aria. (We get the definite feeling she was disciplined for performance of tasks but not much if at all for behaviors that are due to heart issues.) There are quite a few behavior/heart issues we are dealing with on a daily basis, and so we just need prayers in this area for wisdom, discernment, and lots and lots of patience.

Thank you for following her journey. We are so grateful for your continued intercession on her and our behalf.

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