4.22.10

Yesterday was our appointment with Adolescent Medicine, which actually turned out to be an appointment with a Pediatric/Adolescent Gynecologist and an Endocrinologist (hormones). The quick rundown of the appointment is that we are having more testing done. There may be something to the issues with her reproductive system, but it may be that will go away on its own. We will get more information after the initial test results come back in a month or so. It doesn't sound like we will be getting a definitive diagnosis from these tests for her overall problems, rather that these problems are side effects of the bigger issue.

If you would like to read a more detailed version, I'll include that too. Aimee's appointment was with the gynecologist, however, she just happened to have an endocrinologist attending her appointments with her for the day. We were meeting with this department for two different reasons. First, that the vaginal opening was not apparent. Second, there were several cysts on one of her ovaries. Neither one of these issues is a major cause for concern on its own. However, we also discovered while we were there that she has some breast buds forming. Add that on top of the other two issues and we could have a bigger problem.

Basically, there are 3 different potential causes:

1. Her brain is telling her body that it is time to go through puberty, causing cysts and breasts to form.
   
2. Her thyroid is messing up the production of appropriate levels of hormones, causing cysts and breasts form.
   
3. The cysts, which are pockets of estrogen, could be raising the overall levels of estrogen in her body, causing a temporary swelling of the breasts.
   

We had a few blood tests taken yesterday to look for indicators of one of the first 2 possibilities. They are concerned that it may be a brain issue, since we do know that her brain is not developing normally. We have to wait to treat the vaginal issue until we know which of the above is happening, because they use steroids and/or hormones as a treatment. However, we can't wait too long, because there is a potential that the problem could develop further and not allow her to urinate. If this happens, she would have to go in for an emergency surgery.

Her therapy appointment went well yesterday. She was very responsive, despite having already been through several hours of appointments that day.

Upcoming appointments:

• Occupational Therapist at home Wednesdays
  
• Washington Sensory Disability Services 5.10.10 (tentative)
• Visual Disability Specialist 5.17.10 (tentative)
  
• 15 month check up with Naturopathic Pediatrician 5.24.10
• Genetics 5.24.10
• Orthopedic 5.24.10
• Orthotics 5.24.10
• Neurodevelopmental 6.2.10
• Audiology 6.3.10 (tentative)
  
• Endocrinology 6.9.10

At the end of June our financial aid expires. Please pray for continued favor in that area. We are continually reminded of the big blessing that is when we get our insurance notices. Nice to see those 10 thousand dollar bills owed be erased!
Also, please pray for Ed and I. The length and slowness of the process is really taxing and there does not seem to be an end/answer in sight. Aimee seems to be doing well through it all. The appointment days are a bit much for her, but she recovers quickly.
Thank you for your support!

4.16.10

What's next?

Wish I had an intelligent answer to that question. Instead, all I have are more specialists, who like me, do not have an intelligent answer. I met with our resource coordinator on Wednesday. We are lining up to meet with 3 new local specialists. One is the area representative for the Washington Sensory Disability Services. She will be coming over and giving us specific suggestions on how to make the most of Aimee's sensory abilities. We will also be meeting with a doctor from Mount Vernon who specializes in visual disabilities. After that, we will be meeting with a woman from the school district who represents students/children that have hearing disabilities. At least we don't have to wait for a diagnosis to begin constructive, practical planning!

Next Wednesday, April 21st, Aimee and I are going in to meet with Adolescent Medicine for the first time. It seems very strange to me to meet with this department. The description on the Seattle Children's website says "Adolescent Medicine is the care of people in and around their teen years, from about ages 9 to 21 years...Our team is expert in attending to the physical, emotional and social needs of people from puberty though young adulthood." Hmm. While I realize that her ovaries are a part of her reproductive system and thus are related to adolescence, it still seems odd at this time. I have to wonder, is this really necessary or are we grabbing at straws? How helpful is this going to be? I guess we will find out on Wednesday.

4.6.10

Had a little appointment for Aimee this morning with her Naturopathic Pediatrician. She has had some strange genital sores for the last few weeks and I finally gave up trying to get rid of them myself when they started spreading. Turns out it is just an infection caused by a combination of factors, including the fact that she is such a good sleeper and eater. Kind of funny, but because she sleeps so long at night and eats such a variety of foods (especially the acidic foods), there is a wider range of bacterias that are against her skin for too long of a time. The doctor recommended that I use disposable diapers at night, as we definitely don't want to limit her diet or wake her up in the middle of the night to change her diaper.
Honestly, I was a bit dissapointed. Really, it isn't much, but it just means we have to buy disposable diapers and add to land fills. We have been trying to do our little part and reuse as much as possible...I know it is such a small thing...I just hate to "give in". If it had been any other doctor I would have argued, but I know Dr Cowan used cloth diapers with his kids and definitely agrees with us using them in general.
Funny how the little things get to you! As if it somehow negates us using cloth in general, because we will be using one disposable a day! I think my reaction is because of all the negative responses that I get to using cloth. It was the same with having her at home or pumping breastmilk...people feel that I am judging their choices, just because I believe that it's okay to not choose the most conveinant option. I wish people didn't feel judged, rather that they felt encouraged to rethink their own choices. Maybe no one will change their actions, but I hope they at least realize that they are making a choice, even if their only motivation is conveinance. Sometimes easy is just too good of an option to pass up.