Our little Silas is 6 WHOPPIN' MONTHS OLD! I can hardly believe it. So
proud of him and his sweet laugh and uber goober baby cheeks. He is such
a cute baby. Toadally hoppin' over that froggie of mine :) Thanks for
sharing this milestone with us.
Oh and.... happy 3 months breastfeeding to us too! More on this math soon ;)
Thursday, January 31, 2013
Resources & Support (from his caringbridge)
I often get questions from people about my son's condition from people
who obviously are masters at google and wikipedia. So, for all who may
be searching for answers, here are some better resources and supports
The Foundation for Children with Microcephaly: www.childrenwithmicro.org This is a great site with information for those who have kids effected my microcephaly, lyssencephaly, and polygeria. They also have a facebook page, so if you are on facebook check them out!
Syndromes Without a Name USA http://www.undiagnosed-usa.org This site is for persons with many varying syndromes which have no name. Several of the stories there involve children with microcephaly and no known cause. Only about 50% of microcephaly cases have a known cause/diagnosis. Microcephaly is not typically a diagnosis, but a symptom.
Microcephaly group on Facebook. I am part of a very supportive group here that is also active and worldwide. One of the most helpful resources for hands-on experience. It is a closed group, but you can search and request to join :)
Many states actually have local foundations for microcephaly, so check and see if your state has one already. If not, consider talking to your child's neurologist about whether there is a need for one. You may find you aren't alone!
And one of the most encouraging and relevant resources are the other caring bridge pages, blogs, and websites written by parents just like me and you! I am working on gathering a list of these and hope to have one soon with the author's permissions that share the stories of strength, hope, and experience of other children with microcephaly.
Hope you all have a great day and thanks for visiting!
The Foundation for Children with Microcephaly: www.childrenwithmicro.org This is a great site with information for those who have kids effected my microcephaly, lyssencephaly, and polygeria. They also have a facebook page, so if you are on facebook check them out!
Syndromes Without a Name USA http://www.undiagnosed-usa.org This site is for persons with many varying syndromes which have no name. Several of the stories there involve children with microcephaly and no known cause. Only about 50% of microcephaly cases have a known cause/diagnosis. Microcephaly is not typically a diagnosis, but a symptom.
Microcephaly group on Facebook. I am part of a very supportive group here that is also active and worldwide. One of the most helpful resources for hands-on experience. It is a closed group, but you can search and request to join :)
Many states actually have local foundations for microcephaly, so check and see if your state has one already. If not, consider talking to your child's neurologist about whether there is a need for one. You may find you aren't alone!
And one of the most encouraging and relevant resources are the other caring bridge pages, blogs, and websites written by parents just like me and you! I am working on gathering a list of these and hope to have one soon with the author's permissions that share the stories of strength, hope, and experience of other children with microcephaly.
Hope you all have a great day and thanks for visiting!
Wednesday, January 30, 2013
Sleep Deprivation & Tears (from his caringbridge)
4:30 AM- Slam head on nightstand trying to hit snooze on my phone. Oh right, it's EEG day! Ugh! Roll out of bed
6:30 AM- Get kids up. Pack lunches. Make breakfas
7:30 AM- realize the middle child with curly hair lost my keys, call mother in law, freak out, dig through dirty clothes basket, find keys
9:00 AM- Check In at OPSU at NHRMC FOR EEG.
10:00 AM- EEG COMPLETE
So, it was quite the day. Arriving late after a hectic morning at the house, not having my wallet (thankfully we have been there so often they don't usually need our ins. cards and such), and then nearly being hit by a car on the way to the hospital. I was actually happy when we were shown to the room and the electrodes were placed with little fan-fare from Silas. He did fuss a little. Thankfully, we had a well-experienced tech at the helm. Paul, our tech, had been doing this for about 20 years. It was interesting watching him stare at my son, then back at the screen, even if a bit alarming. I did ask him about what he saw, and he said *MOST of it looks like involuntary movement* but threw in the disclaimer about Dr Tennison, our neurologist, doing the reading and report. He told me Dr. Tennison usually has quick turn-around time and to call later today if I had not received results by 4pm. So I called, no results yet. Hopefully soon. You'll know when I know. As always, we wait and see...
Edited to add a few questions I was just asked twice by two different people:
What will the results answer?
A few possible answers we might get for our questions:
1) is his shakiness seizure activity
2) where in the brain are the abnormal movements coming from
3) does he have any abnormal brain wave activity that gives us any information about why his head is so small
6:30 AM- Get kids up. Pack lunches. Make breakfas
7:30 AM- realize the middle child with curly hair lost my keys, call mother in law, freak out, dig through dirty clothes basket, find keys
9:00 AM- Check In at OPSU at NHRMC FOR EEG.
10:00 AM- EEG COMPLETE
So, it was quite the day. Arriving late after a hectic morning at the house, not having my wallet (thankfully we have been there so often they don't usually need our ins. cards and such), and then nearly being hit by a car on the way to the hospital. I was actually happy when we were shown to the room and the electrodes were placed with little fan-fare from Silas. He did fuss a little. Thankfully, we had a well-experienced tech at the helm. Paul, our tech, had been doing this for about 20 years. It was interesting watching him stare at my son, then back at the screen, even if a bit alarming. I did ask him about what he saw, and he said *MOST of it looks like involuntary movement* but threw in the disclaimer about Dr Tennison, our neurologist, doing the reading and report. He told me Dr. Tennison usually has quick turn-around time and to call later today if I had not received results by 4pm. So I called, no results yet. Hopefully soon. You'll know when I know. As always, we wait and see...
Edited to add a few questions I was just asked twice by two different people:
What will the results answer?
A few possible answers we might get for our questions:
1) is his shakiness seizure activity
2) where in the brain are the abnormal movements coming from
3) does he have any abnormal brain wave activity that gives us any information about why his head is so small
Monday, January 28, 2013
"But His Head Doesnt Look Small" (from his caringbridge)
This is probably the comment I hear most often when I explain what the
term microcephaly means. Head appearance can be deceiving. Because of
how Drs measure the circumference of the head, many children who don't
physically appear to have smaller-than-average heads in fact do. Even
Silas' physical therapist had a difficult time seeing his "small head"
until I showed her a photograph of him with a typically developing baby
his age.
"But why does a small head matter?" comes in a close second. There is no way to measure the size or weight of the human brain while it is in the body. We can examine the structure, placement, size relative to other portions of the brain, proportionality overall, and even distinguish surface texture. A normally developing brain has ridges and groves that give it that funny wrinkled appearance we have all seen on models. Brain growth determines head growth. In fact, if the head is not growing, it is a sure bet neither is the brain. The growth of the brain is what CAUSES the head size to grow. Head circumference growth directly shows brain growth, ALWAYS. This is why you may also see microencephaly as part of Silas' diagnosis. Although, many physicians just use one or the other. Because we know Silas' head started out smaller than the average baby of his gestational age, is growing at a slower rate than typically developing babies, we also know the same is true for his brain
The next logical question usually follows: What does slow brain and head growth mean? How does it affect Silas
This may well be the most difficult and least conclusive question to answer. Brain growth accounts for a baby meeting milestones- like learning to eat, clap, roll over, sit up, walk- as well as emotional maturity, physical coordination, and intellectual ability. What we do know is that Silas has been slow to meet his milestones and required physical therapy help in this area and occupational therapy help to learn to feed properly. What we do not know and cannot predict is how the continued slow growth of his brain will effect him in the future. This effects every baby differently. There are children with small brains who are minimally effected and others who depend on their family for every aspect of daily living. Only time will reveal where on the spectrum Silas will fall.
We do have a few positive predictors to consider. One, physical therapy helped him catch up on his milestones. Two, his father has a smallish (about 5th%) head and is of normal inteligence. Three, he has been able to learn new skills with guidance. Four, he shows some signs of fine-motor development beginning (scratching, pointer to thumb reflex at random) which are precursors to later milestones.
So, how can you help? If you have the chance to play with Silas, use lots of varying positions for playing. He loves tummy time. Encourage him to try and reach for objects. Help him with supported sitting and give him a toy to hold. Talk to him, mimic his sounds, and let him try to mimic yours. Please do not give him food. He is not ready for this and cannot control his gag reflex which is a choking hazard. Love on him. Tickle him. Smile at him. He will probably smile back!
"But why does a small head matter?" comes in a close second. There is no way to measure the size or weight of the human brain while it is in the body. We can examine the structure, placement, size relative to other portions of the brain, proportionality overall, and even distinguish surface texture. A normally developing brain has ridges and groves that give it that funny wrinkled appearance we have all seen on models. Brain growth determines head growth. In fact, if the head is not growing, it is a sure bet neither is the brain. The growth of the brain is what CAUSES the head size to grow. Head circumference growth directly shows brain growth, ALWAYS. This is why you may also see microencephaly as part of Silas' diagnosis. Although, many physicians just use one or the other. Because we know Silas' head started out smaller than the average baby of his gestational age, is growing at a slower rate than typically developing babies, we also know the same is true for his brain
The next logical question usually follows: What does slow brain and head growth mean? How does it affect Silas
This may well be the most difficult and least conclusive question to answer. Brain growth accounts for a baby meeting milestones- like learning to eat, clap, roll over, sit up, walk- as well as emotional maturity, physical coordination, and intellectual ability. What we do know is that Silas has been slow to meet his milestones and required physical therapy help in this area and occupational therapy help to learn to feed properly. What we do not know and cannot predict is how the continued slow growth of his brain will effect him in the future. This effects every baby differently. There are children with small brains who are minimally effected and others who depend on their family for every aspect of daily living. Only time will reveal where on the spectrum Silas will fall.
We do have a few positive predictors to consider. One, physical therapy helped him catch up on his milestones. Two, his father has a smallish (about 5th%) head and is of normal inteligence. Three, he has been able to learn new skills with guidance. Four, he shows some signs of fine-motor development beginning (scratching, pointer to thumb reflex at random) which are precursors to later milestones.
So, how can you help? If you have the chance to play with Silas, use lots of varying positions for playing. He loves tummy time. Encourage him to try and reach for objects. Help him with supported sitting and give him a toy to hold. Talk to him, mimic his sounds, and let him try to mimic yours. Please do not give him food. He is not ready for this and cannot control his gag reflex which is a choking hazard. Love on him. Tickle him. Smile at him. He will probably smile back!
Sunday, January 27, 2013
Solving a Mystery (from his caringbridge)
One of the issues I am having with Silas lately is discerning what is
him having an off day and what is him having something that warrants a
medical opinion. As his mom, I distinguish every cry. I know if it's
hunger, fatigue, pain. But sometimes I'm not sure . Last night is a
perfect example
We had already had our night feeding. The girls were in bed. Silas was asleep. All of a sudden, he woke up with this piercing cry. Because of his microcephaly there are times he is shrill. Last night was one of those. I tried intercepting the cry with cuddling, changing, feeding, patting, investigating for too tight clothing or wrapped fingers, toes, etc in mommy's hair. No luck. It just kept on. After 30 minutes I was concerned enough to look up the vitaline number and consider calling, and in an instant he was quiet and acting happy
What gives? Did he just have a bad day or is it something invincible causing him pain? I don't know. I think this may be my biggest struggle. Not knowing what is wrong with him in those moments and all of my soothing techniques failing to help him. There is nothing that saddens me more than watching my child(ren) cry and being unable to help.
We had already had our night feeding. The girls were in bed. Silas was asleep. All of a sudden, he woke up with this piercing cry. Because of his microcephaly there are times he is shrill. Last night was one of those. I tried intercepting the cry with cuddling, changing, feeding, patting, investigating for too tight clothing or wrapped fingers, toes, etc in mommy's hair. No luck. It just kept on. After 30 minutes I was concerned enough to look up the vitaline number and consider calling, and in an instant he was quiet and acting happy
What gives? Did he just have a bad day or is it something invincible causing him pain? I don't know. I think this may be my biggest struggle. Not knowing what is wrong with him in those moments and all of my soothing techniques failing to help him. There is nothing that saddens me more than watching my child(ren) cry and being unable to help.
Saturday, January 26, 2013
Unpredictable: Neuro Consult Update (from his caringbridge)a"
I am sorry it has taken me so long to chronicle our appointment with Dr.
Tennison. Partly, I have just been busy with other appointments, partly
I have been trying to gather my thoughts. I am going to do this
chronologically
We got there on time, checked in, were weighed, measured, and put in the room. At the specialty clinics, you have to fill out a ton of patient, medical, familial, and other history on the computer. When you are finished, the Doctor reviews it and then comes in to the room.
Meeting Dr. Tennison was kind of funny. He is Christopher Lloyd Weber meets Dick Van Dyke. I had lots of questions, I had them written in my notebook. I jotted down his head circumference 39.2cms and all his other measurements.
We talked about the movements in his hands- abnormal involuntary movements they are being called- as signs of a still-immature nervous system. He didn't feel an EEG was necessary, even with a family history of seizures, but did say that many children with micro do have seizures at some point in their life
We also discussed developmental delay, cognitive impairment, and mental retardation. This was one of the more difficult topics. 95% of children with microcephaly have some level of cognitive impairment, and because Silas has had developmental delay in the past he is more likely to be impaired in the future.
The most interesting topic for me was learning the differing causes of microcephaly: cerebral palsy/stroke, brain structure, or genetic/metabolic influence. Dr. Tennison ruled out brain structure and cerebral palsy/stroke as the causes of Silas' microcephaly based on his MRI and prenatal and birth history. He has congenital microcephaly, meaning it has been there since birth, and likely stems from a genetic/metabolic source
He performed a thorough physical exam of our son and noted any anomalies: sacral dimple, epicanthal folds, unique iris pattern, pointed ear, micrognathia (small jaw/chin), post auricular creases. From this and the measurements of all our heads, he decided we were candidates for genetic consult. The wait time for this is lengthy, but the outcome could give us answers to many of our questions
I left feeling both hopeful and cautious. The Dr. could give us no prediction of how our son would fare as time passed. He could not assure us we would find a genetic/metabolic link (only 50% do). There was no way to know whether Silas would speak, walk, or be able to eat typical age-appropriate food. The wait and see method is the most difficult to accept when it concerns the well-being of your child, but that is what we were advised to do
We go back in 6 months, right after his 1st birthday. Will he even be able to enjoy cake? Time will tell...
We got there on time, checked in, were weighed, measured, and put in the room. At the specialty clinics, you have to fill out a ton of patient, medical, familial, and other history on the computer. When you are finished, the Doctor reviews it and then comes in to the room.
Meeting Dr. Tennison was kind of funny. He is Christopher Lloyd Weber meets Dick Van Dyke. I had lots of questions, I had them written in my notebook. I jotted down his head circumference 39.2cms and all his other measurements.
We talked about the movements in his hands- abnormal involuntary movements they are being called- as signs of a still-immature nervous system. He didn't feel an EEG was necessary, even with a family history of seizures, but did say that many children with micro do have seizures at some point in their life
We also discussed developmental delay, cognitive impairment, and mental retardation. This was one of the more difficult topics. 95% of children with microcephaly have some level of cognitive impairment, and because Silas has had developmental delay in the past he is more likely to be impaired in the future.
The most interesting topic for me was learning the differing causes of microcephaly: cerebral palsy/stroke, brain structure, or genetic/metabolic influence. Dr. Tennison ruled out brain structure and cerebral palsy/stroke as the causes of Silas' microcephaly based on his MRI and prenatal and birth history. He has congenital microcephaly, meaning it has been there since birth, and likely stems from a genetic/metabolic source
He performed a thorough physical exam of our son and noted any anomalies: sacral dimple, epicanthal folds, unique iris pattern, pointed ear, micrognathia (small jaw/chin), post auricular creases. From this and the measurements of all our heads, he decided we were candidates for genetic consult. The wait time for this is lengthy, but the outcome could give us answers to many of our questions
I left feeling both hopeful and cautious. The Dr. could give us no prediction of how our son would fare as time passed. He could not assure us we would find a genetic/metabolic link (only 50% do). There was no way to know whether Silas would speak, walk, or be able to eat typical age-appropriate food. The wait and see method is the most difficult to accept when it concerns the well-being of your child, but that is what we were advised to do
We go back in 6 months, right after his 1st birthday. Will he even be able to enjoy cake? Time will tell...
Wednesday, January 23, 2013
Another Day, Another Appointment (reposted from his caringbridge)
So, I have not updated on the big neurology appointment we had last Friday, but I promise to get to it tonight.
Today we saw the pediatrician about some sleep disturbances Silas has been experiencing, and while we don't think they are seizures, we also can't know with certainty without an EEG. So, we put that on the books for Jan 30th at 830AM. It's a sleep-deprived EEG so I have the joy of waking him at 430 am and trying to keep him awake until his EEG, and you know how they just LOVE to run behind! Wish us luck, good brain wave vibes, and SEE SOMETHING thoughts! I either want a *FOR SURE* yes or no! Nothing inconclusive PLEASE
Today we saw the pediatrician about some sleep disturbances Silas has been experiencing, and while we don't think they are seizures, we also can't know with certainty without an EEG. So, we put that on the books for Jan 30th at 830AM. It's a sleep-deprived EEG so I have the joy of waking him at 430 am and trying to keep him awake until his EEG, and you know how they just LOVE to run behind! Wish us luck, good brain wave vibes, and SEE SOMETHING thoughts! I either want a *FOR SURE* yes or no! Nothing inconclusive PLEASE
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