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. :)
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!
02.18
Aimee had her 1 year check up this morning with Dr Cowan at Skagit Natural Family Medicine. She is making great physical growth progress. She is now 30" tall (75th percentile), 21lbs 4 oz (50th) and her head is still well below, but following the curve at 41 1/2 cm.
The doctor said she is eating solids so well that we can wean her off of breastmilk and formula to organic whole milk (hooray!).
Also, yesterday in her Occupational Therapy appointment, Aimee was really responsive and trying to work with the OT on rolling over. It was great to see her actually desiring to do it and figuring out some of the muscles.
I will update again next week after her appointment with Genetics and Orthopedics.
The doctor said she is eating solids so well that we can wean her off of breastmilk and formula to organic whole milk (hooray!).
Also, yesterday in her Occupational Therapy appointment, Aimee was really responsive and trying to work with the OT on rolling over. It was great to see her actually desiring to do it and figuring out some of the muscles.
I will update again next week after her appointment with Genetics and Orthopedics.
About Aimee
What We Say:
-Aimee is peaceful in the midst of storms. Her attitude is primarily full of delight, relaxation, and joy.
-Aimee holds the world title for best cuddler.
-Aimee is ticklish and she laughs at the sounds that make the rest of us cringe (screaming sibling, smoke alarm, fire engine, train whistles, high pitched tools).
-Aimee likes to hold hands and squeeze fingers.
-Aimee recognizes voices.
-Aimee is bright. She protects herself by going to sleep when she is scared, overwhelmed, or unsure of her surroundings.
-Aimee is self motivated. No matter how hard it is and how many times she cannot do it, she continually tries to hold up her head.
-Aimee is beautiful.
-Aimee is a ballerina at heart.
-Aimee likes country music, 50's, and 80's.
-Aimee is a mystery worth spending a lifetime researching.
-Aimee is limited and challenged; God is unlimited and not challenged by her situation.
-We love Aimee!
What The Doctors Say:
-Severe Developmental Delay- Aimee has developed to the abilities of a 2-3 month old baby. They expect her to remain at this "age" for the rest of her life.
-Microcephaly- Aimee has a very small head (.26 percentile) due to her lack of brain growth since birth. The growth in her face has been disproportionate and is causing little issues, for example her tear ducts have been forced to narrow and are continually clogged despite probing and stints.
-Delayed Myelination- The wiring that runs signals through the brain is coated with a substance called myelin, which allow these signals to run through quickly and to the correct place. When Aimee was a baby her myelin was severely underdeveloped, which did not allow her brain to form the connections it should have been learning to make at that time. The doctors believe this is just a symptom of her overall disorder, which is undiagnosed.
-Hypotonic- She has very low muscle tone, not lack of strength, but her muscles are too loose which keeps her from building strength. This causes lots of secondary issues, such as scoliosis.
-At Risk for Aspiration- Due to the low tone in her throat and mouth, it is considered unsafe for Aimee to take food and fluids by mouth. She has a feeding tube and receives a home blended diet through that. She also fights to deal with secretions like phlegm and saliva, which we use a suction machine to clear in order to protect her airway.
-Sleep Apnea and Hypoventilation- Also due to the low muscle tone, Aimee struggles to breath adequately while she sleeps. She retains excess carbon dioxide in her blood stream due to shallow breathing. She has been very sleepy her whole life and we think waking up hundreds of times a night is part of the cause. She is on a BiPap machine.
-High Risk for Respiratory Infection- Again due to the low muscle tone and her inability to handle secretions, the doctors' statistics give her a slim chance of living to adulthood, expecting her to begin to fight with pneumonias and eventually lose that fight. She is on steroid inhalers to help her prepare to fight the many illnesses that come her way.
-Chronic Constipation- Yet again due to the low muscle tone, Aimee needs help from medications, aside from lots of dietary supplements, to keep waste moving out.
-Congenital Bilateral Club Feet- She was born with club feet that were corrected through treatment.
-Hearing Impairment- She has mild to moderate hearing impairment in her both ears and wears bilateral hearing aids especially to hear lower tones.
-Cortical Vision Impairment- Her brain is unable to get many visual signals through, meaning her eyes see well and send the signal to the vision center, but her brain looses the information or can't interpret it most of the time.
-General and Localized Seizures- Aimee has multiple different types of seizures, both general tonic seizures that involve her whole brain at once and localized seizures that are only one part of her brain at a time. She is on a couple different medications to control them.
-Reflux- Partly due to muscle tone and partly due to constipation, Aimee struggles with reflux and is on strong medication to combat it.
-Aimee is peaceful in the midst of storms. Her attitude is primarily full of delight, relaxation, and joy.
-Aimee holds the world title for best cuddler.
-Aimee is ticklish and she laughs at the sounds that make the rest of us cringe (screaming sibling, smoke alarm, fire engine, train whistles, high pitched tools).
-Aimee likes to hold hands and squeeze fingers.
-Aimee recognizes voices.
-Aimee is bright. She protects herself by going to sleep when she is scared, overwhelmed, or unsure of her surroundings.
-Aimee is self motivated. No matter how hard it is and how many times she cannot do it, she continually tries to hold up her head.
-Aimee is beautiful.
-Aimee is a ballerina at heart.
-Aimee likes country music, 50's, and 80's.
-Aimee is a mystery worth spending a lifetime researching.
-Aimee is limited and challenged; God is unlimited and not challenged by her situation.
-We love Aimee!
What The Doctors Say:
-Severe Developmental Delay- Aimee has developed to the abilities of a 2-3 month old baby. They expect her to remain at this "age" for the rest of her life.
-Microcephaly- Aimee has a very small head (.26 percentile) due to her lack of brain growth since birth. The growth in her face has been disproportionate and is causing little issues, for example her tear ducts have been forced to narrow and are continually clogged despite probing and stints.
-Delayed Myelination- The wiring that runs signals through the brain is coated with a substance called myelin, which allow these signals to run through quickly and to the correct place. When Aimee was a baby her myelin was severely underdeveloped, which did not allow her brain to form the connections it should have been learning to make at that time. The doctors believe this is just a symptom of her overall disorder, which is undiagnosed.
-Hypotonic- She has very low muscle tone, not lack of strength, but her muscles are too loose which keeps her from building strength. This causes lots of secondary issues, such as scoliosis.
-At Risk for Aspiration- Due to the low tone in her throat and mouth, it is considered unsafe for Aimee to take food and fluids by mouth. She has a feeding tube and receives a home blended diet through that. She also fights to deal with secretions like phlegm and saliva, which we use a suction machine to clear in order to protect her airway.
-Sleep Apnea and Hypoventilation- Also due to the low muscle tone, Aimee struggles to breath adequately while she sleeps. She retains excess carbon dioxide in her blood stream due to shallow breathing. She has been very sleepy her whole life and we think waking up hundreds of times a night is part of the cause. She is on a BiPap machine.
-High Risk for Respiratory Infection- Again due to the low muscle tone and her inability to handle secretions, the doctors' statistics give her a slim chance of living to adulthood, expecting her to begin to fight with pneumonias and eventually lose that fight. She is on steroid inhalers to help her prepare to fight the many illnesses that come her way.
-Chronic Constipation- Yet again due to the low muscle tone, Aimee needs help from medications, aside from lots of dietary supplements, to keep waste moving out.
-Congenital Bilateral Club Feet- She was born with club feet that were corrected through treatment.
-Hearing Impairment- She has mild to moderate hearing impairment in her both ears and wears bilateral hearing aids especially to hear lower tones.
-Cortical Vision Impairment- Her brain is unable to get many visual signals through, meaning her eyes see well and send the signal to the vision center, but her brain looses the information or can't interpret it most of the time.
-General and Localized Seizures- Aimee has multiple different types of seizures, both general tonic seizures that involve her whole brain at once and localized seizures that are only one part of her brain at a time. She is on a couple different medications to control them.
-Reflux- Partly due to muscle tone and partly due to constipation, Aimee struggles with reflux and is on strong medication to combat it.
2.5.10
We are having a difficult challenge this week in seeing our good friends go through some of the things we have been through. Their new little baby boy (born on Feb 2nd) is down at Children's (I should say trapped, cause that is what happens once your baby is admitted to the hospital) trying to find a suitable solution for his overworking heart.
I can't say how much of a struggle it has been for me as friends come closer and closer to their due dates. I am so nervous to have "normal", "average" babies around. It's okay to just see them in passing, but what about when we watch them grow...and watch them pass up Aimee, even though they are a year younger or more.
On the other hand, I don't want my dear friend to have to go through anything that we have had to. I would much rather have the awkwardness of seeing her little boy grow, than the pain of watching from the sidelines...knowing so much of what is going on in her heart. Wasn't it enough for us to go through it? Did it not spare anyone else from the pain? Unfortunately, it doesn't look like it did.
Please pray for Corbin and his parents. Pray for peace and speedy answers.
I can't say how much of a struggle it has been for me as friends come closer and closer to their due dates. I am so nervous to have "normal", "average" babies around. It's okay to just see them in passing, but what about when we watch them grow...and watch them pass up Aimee, even though they are a year younger or more.
On the other hand, I don't want my dear friend to have to go through anything that we have had to. I would much rather have the awkwardness of seeing her little boy grow, than the pain of watching from the sidelines...knowing so much of what is going on in her heart. Wasn't it enough for us to go through it? Did it not spare anyone else from the pain? Unfortunately, it doesn't look like it did.
Please pray for Corbin and his parents. Pray for peace and speedy answers.
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