Yesterday, during Aimee's weekly Occupational Therapy appointment, we met with the school district's resource coordinators for her 6 month review. As a part of the application to to the school district's program, the resource coordinators and I had set goals for Aimee. In every area from communication and motor skills to cognitive abilities, we wrote down a few hopeful targets. I am so glad that we did!
When I originally heard that her 6 month review was coming, I braced myself for major disappointment. I find myself wondering if she is changing at all. Other people always say that she is, but I just barely see it. Yet, as we sat there reviewing the goals, I was incredibly encouraged. Aimee had met almost every single goal we set for her. It was astounding to me. Visual tracking? Check. Responding to Ed and I's voices? Check. Batting at toys? Check. Cooing? Check. Verbalizing moods? Check. And so on. She kept knocking them out of the park! WOW! Good job Aimee. A++++++ on your report card!
5.25.10
We made it through a lap of appointments yesterday and as you can see one of us made it through smiling!We finally got Ed in for an appointment with the Naturopath to figure out his sleep issues. He will be going in for a sleep study and blood work to determine if he has sleep apnea or a strain of narcolepsy. The doctor actually thinks it is likely sleep apnea and may be as simple as removal of his tonsils. If this is the case, it would be a huge relief, as he has been struggling with major fatigue his whole life.
Aimee also met with the Naturopathic Pediatrician in the morning for her 15 month check up. She is staying on track with her physical health. She weighed in at 23 pounds (50th percentile) and she is quite tall at 32 inches (90th). Her head is still growing well below the curve at 42.5 centimeters (still growing though!). The only concern that the was raised during this appointment was her head shape. Owing to the fact that she is unable to support her own head, she is continually putting pressure against one side of her skull. It is starting to flatten on the the sides and back slightly. We may go back to Craniofacial to discuss the options for positioning pillows and a helmet.
Next, we met with Genetics. No new information here. All the blood tests that have been run thus far have come back normal. They requested 2 new DNA studies to be done for 2 syndromes that have similar symptoms to Aimee's case. Again, these will take a few weeks to find out if insurance will cover them and then a couple of months to get results. A swallow study was also ordered to be sure that Aimee's low muscle tone isn't causing her to literally inhale food/liquids when she is eating. This may also provide helpful tips for us on the consistency of food/liquids that would be best for her. We were also able to get temporary disability codes to apply for SSI and reapply for financial aid. These will be adjusted when a true diagnosis is found.
After that appointment we met with Orthopedics. This was actually a nice, quick appointment. The doctor said that her feet and joints look beautiful. He was so pleased that he pushed back her next check up with him for 6 months. We are not dissapointed to have one less appointment to drive down for!
Checked on Orthotics and everything looks great there. We will not need a new bar or shoes for a few months.
This next week we will be with Occupational Therapy and Neurodevelopmental. We are praying for God to bring wisdom to the doctors and unravel this conundrum. Feeling a bit overwhelmed myself. I am fairly certain that my brain is crossing wires and confusing signals. Also, please be praying for Ed and I. In the midst of all the pulls for our time and attention, we don't want to lose sight of eachother.
5.13.10
Received the blood work results back from Endocrinology yesterday by mail. The letter simply stated that all the results were normal and that we would hear more at the follow up appointment with this department on June 9th. Honestly, I'm not sure what this means.
I have recently received several applications to attend seminars and retreats for families with blind or severely visually impaired children. It reminds me of why we are hoping to find a diagnosis. Without it we can't apply for disability or obtain approvals for these other types of resources. Lord, give us the perseverance!
Our next big appointment day is May 24th. I will update again after that.
I have recently received several applications to attend seminars and retreats for families with blind or severely visually impaired children. It reminds me of why we are hoping to find a diagnosis. Without it we can't apply for disability or obtain approvals for these other types of resources. Lord, give us the perseverance!
Our next big appointment day is May 24th. I will update again after that.
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:
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:
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!
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:
- Her brain is telling her body that it is time to go through puberty, causing cysts and breasts to form.
- Her thyroid is messing up the production of appropriate levels of hormones, causing cysts and breasts form.
- 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
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.
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.
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.
3.23.10
Audiology Update:
I was able to talk to the doctor today who performed Aimee's hearing exam on the 12th. The conversation was similar to the one we had after the exam. The doctor had discussed the situation with her colleagues, however, was still uncertain what is the best course of action. The big question is, if and when her myelin develops will it improve her hearing?
We are meeting with Genetics at the end of May and Neurodevelopmental at the beginning of June. We should also be meeting with the Washington Sensory Disability Services around that time. Since the situation is not cut and dry, the audiology doctor and I will touch basis again after those appointments to discuss next steps. We are hoping that her behavorial development will change enough over the next 6 months that we can do functional testing rather than putting her back under aenesthetic. We will most likely retest her using one of those two options in early September. If her hearing has not improved significantly, we will have her fitted for hearing implements.
Next stop, Adolescent Medicine!
I was able to talk to the doctor today who performed Aimee's hearing exam on the 12th. The conversation was similar to the one we had after the exam. The doctor had discussed the situation with her colleagues, however, was still uncertain what is the best course of action. The big question is, if and when her myelin develops will it improve her hearing?
We are meeting with Genetics at the end of May and Neurodevelopmental at the beginning of June. We should also be meeting with the Washington Sensory Disability Services around that time. Since the situation is not cut and dry, the audiology doctor and I will touch basis again after those appointments to discuss next steps. We are hoping that her behavorial development will change enough over the next 6 months that we can do functional testing rather than putting her back under aenesthetic. We will most likely retest her using one of those two options in early September. If her hearing has not improved significantly, we will have her fitted for hearing implements.
Next stop, Adolescent Medicine!
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