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!
3.19.10
I finally got the results from the ultrasound today. We were told that she has a normal uterus and that both ovaries were identified, however, her right ovary was enlarged and contained several cysts. This in itself is most likely not a cause for concern, but it can be sign of other problems. So, we are scheduling an appointment to meet with Adolescent Medicine to discuss the issues that we have found in her reproductive areas and possibly have imaging done of her lower spine.
I have not heard back from the Audiology department regarding their recommendation for Aimee's ears. We should be making a decision on that in the next week.
Therapy appointments are going well. We will be having a couple of specialists come talk with us that are associated with Washington Sensory Disability Services. Aimee is a little puzzle and we are taking advice from anyone willing to give it! Only wish there were more hints!
I have not heard back from the Audiology department regarding their recommendation for Aimee's ears. We should be making a decision on that in the next week.
Therapy appointments are going well. We will be having a couple of specialists come talk with us that are associated with Washington Sensory Disability Services. Aimee is a little puzzle and we are taking advice from anyone willing to give it! Only wish there were more hints!
3.13.10
We spent yesterday afternoon at the surgery center with Aimee. She was put under anesthesia for about 2.5 hours while they checked out her hearing abilities. Always a nerve racking experience! Aimee did really well, aside from trying to get away from the dreaded mask with the "magic air". Also, we had the same anesthesiologist as we did for the Brain MRI. Aimee has difficult veins to get an IV into and thankfully this doctor had made a note as to which vein had ended up working for the MRI. So she was only attacked once with the needle!
After the procedure, we met with the doctor while Aimee was coming to. A lot of the information went over our heads, but the gist of it was that Aimee does have a delay between the time that sounds enter her ear and when they reach her brain. This is due to the insufficient amount of myelin. Also, she has mild hearing loss in both ears. In lower tones, her loss is mild to moderate and in higher tones, it is more slight to mild.
At close proximity, Aimee can hear everything just fine. Depending on the tone and the amount of background noise, she can also hear from a distance. So if you are holding her or near her, she can hear you talking.
Our options at this point are either to have hearing aids made for her or to have her tested again in 6 months to see where we are at before making a decision. The doctor is going to confer with her colleagues and get back to us on Monday before giving us her recommendation.
We are undecided at this point as well. We definitely want to give Aimee every advantage possible, but do not want to rush into any decisions. The loss is slight and it may be directly linked to the myelin issue. If it is and we were to get her hearing aids, there is a potential that her abilities would change and we would be magnifying sounds to high.
Ugh decisions...
After the procedure, we met with the doctor while Aimee was coming to. A lot of the information went over our heads, but the gist of it was that Aimee does have a delay between the time that sounds enter her ear and when they reach her brain. This is due to the insufficient amount of myelin. Also, she has mild hearing loss in both ears. In lower tones, her loss is mild to moderate and in higher tones, it is more slight to mild.
At close proximity, Aimee can hear everything just fine. Depending on the tone and the amount of background noise, she can also hear from a distance. So if you are holding her or near her, she can hear you talking.
Our options at this point are either to have hearing aids made for her or to have her tested again in 6 months to see where we are at before making a decision. The doctor is going to confer with her colleagues and get back to us on Monday before giving us her recommendation.
We are undecided at this point as well. We definitely want to give Aimee every advantage possible, but do not want to rush into any decisions. The loss is slight and it may be directly linked to the myelin issue. If it is and we were to get her hearing aids, there is a potential that her abilities would change and we would be magnifying sounds to high.
Ugh decisions...
3.9.10 update
Alright one more note to add:
I just spoke to the nurse and she said we definitely will not be able to stay with her during the procedure and we may have to leave before she goes to sleep and come back after she wakes up...ugh I feel sick. They say it so casually...you'll be able to go get a bite to eat and read a book...do you really think that is what I want to do? Sure I trust you (kind of) in a doctor kind of way, but do I want to leave you alone with my baby girl or want her to fall asleep alone with strange people? On top of that she can't eat for 7 hours before hand. Hungry, alone baby. Who comes up with these ridiculous ideas! :(
Okay, enough venting. :)
I just spoke to the nurse and she said we definitely will not be able to stay with her during the procedure and we may have to leave before she goes to sleep and come back after she wakes up...ugh I feel sick. They say it so casually...you'll be able to go get a bite to eat and read a book...do you really think that is what I want to do? Sure I trust you (kind of) in a doctor kind of way, but do I want to leave you alone with my baby girl or want her to fall asleep alone with strange people? On top of that she can't eat for 7 hours before hand. Hungry, alone baby. Who comes up with these ridiculous ideas! :(
Okay, enough venting. :)
3.9.10
Couple of quick updates:
- Aimee's most recent blood test results came back normal. They tested her long chain fatty acids and did a more intensive version of the cholesterol test.
- Have not gotten the results for the x-rays done on her hands and wrists as of yet.
- Pelvic ultrasound of her uterus and ovaries was yesterday with Radiology. Should have the results by the end of the week.
- Tomorrow (Wednesday), Aimee and I are going in for 2 appointments to prepare for her Friday's procedure. The first will be a simple hearing exam with the Otolaryngology department. The second will be an appointment with the Anesthesiologist.
- Friday afternoon will be her appointment with Audiology for the actual test itself. She will be put under for a few hours and they will test her brain responses to sounds. I am assuming this will be a mix between the experiences with the eye exams and the brain MRI. Hopefully we will be able to stay with her the whole time. I don't like taking her down there for appointments when I'm not sure what to expect. She probably can't understand me, but I always tell her on the way what will happen. Sometimes all you can say is, "I don't know exactly what is going to happen, but I can promise you that I am not going to leave you, even if you can't see me for a little while."
2.25.10
Breakdown of this week's appointments:
Genetics:
Wish we had been better prepared to answer so many questions about our family history. We were only ready with what we had thought related to Aimee's symptoms. Oops. Hope we answered everything correctly!
Essentially, we are starting a new round of testing. We were there for about 4 hours getting blood tests drawn and x-rays done on her hands and wrists. They will also be doing an ultrasound or a CT scan on her abdomen, ovaries and uterus. Possibly x-rays on her ankles and feet. A few blood tests. Another set of hearing exams. No "ah ha" moments yet, but this is definitely approaching things from a different angle. The doctor did a very detailed examination and took lots of photographs. She even discovered a few abnormalities we were not aware of ourselves. Sounds like they will also be looking into the likelihood of a repeat in future children.
Orthotics:
They set us up with another new pair of shoes. Only bad news is that she will most likely be wearing them until she is four.
Orthopedics:
According to the doctor, she has a beautiful right foot. He is just proud of his work I think. Her left foot still has some toe issues, but at this point they are not too concerned with it. Her tendons, muscle tone and shape all look great.
Please pray for our finances. Children's is not charging us for any of the above through the end of June, at which point we can apply for more financial aid. However, it seems silly to say, but the cost of getting to Seattle for all of the appointments has been challenging on our budget. We have also had several small vehicle and appliance repair issues lately. It all adds up...or doesn't unfortunately.
Thank you for your continued prayers for Aimee's health and development!
Genetics:
Wish we had been better prepared to answer so many questions about our family history. We were only ready with what we had thought related to Aimee's symptoms. Oops. Hope we answered everything correctly!
Essentially, we are starting a new round of testing. We were there for about 4 hours getting blood tests drawn and x-rays done on her hands and wrists. They will also be doing an ultrasound or a CT scan on her abdomen, ovaries and uterus. Possibly x-rays on her ankles and feet. A few blood tests. Another set of hearing exams. No "ah ha" moments yet, but this is definitely approaching things from a different angle. The doctor did a very detailed examination and took lots of photographs. She even discovered a few abnormalities we were not aware of ourselves. Sounds like they will also be looking into the likelihood of a repeat in future children.
Orthotics:
They set us up with another new pair of shoes. Only bad news is that she will most likely be wearing them until she is four.
Orthopedics:
According to the doctor, she has a beautiful right foot. He is just proud of his work I think. Her left foot still has some toe issues, but at this point they are not too concerned with it. Her tendons, muscle tone and shape all look great.
Please pray for our finances. Children's is not charging us for any of the above through the end of June, at which point we can apply for more financial aid. However, it seems silly to say, but the cost of getting to Seattle for all of the appointments has been challenging on our budget. We have also had several small vehicle and appliance repair issues lately. It all adds up...or doesn't unfortunately.
Thank you for your continued prayers for Aimee's health and development!
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