So its been a little while since I've posted ,I start wondering why am I
doing this? It doesn't even look like any body is reading it,then I decided maybe someone will read it someday and understand or even relate.
I guess today I'm feeling isolated,its July 5th and all day at work everyone couldn't stop talking about what a great holiday weekend they had,the party's, the fireworks, the food.
I miss those times .I don't want to sound like I'm complaining at all.
please don't get me wrong I gladly give all that up to care for my daughter.
that's why I guess I need someone to read this that relates to what I'm saying.
Grace has a mitochondrial disorder her body cannot handle the heat we live in Dallas Texas and its hot.
That puts us at home for what seems like forever.When the temp. is down the pollen is up,its a constant battle.Its not fair to any of us especially Grace ,shes always at home.
I look back at what I've wrote and wonder to myself how can I complain about missing out on food I'm about 230 lbs and haven't missed out on many meals , Grace is tube feed and getting only liquids through a tube,sounds kinda selfish doesn't it.
Maybe ill start juicing fruits and vegetable and go on a liquid diet as well.
Grace is getting so big shes about 54 pounds, and those are heavy pounds.I'm gonna need a gym membership just to continue to lift her,look this is serious, she has to be lifted a lot: in bed,out of bed,in her chair ,out of her chair,in her bath seat and out as well.on the floor to play and right back up again.
We did have a track system installed from her bed to the bath tub or from her bed to her chair but the lift seat is more like a bag, looks like your lifting bag of produce at the grocery store scale to see how much they weigh, I really don't see it being that comfortable,but as she gets bigger well have to make it as comfortable for her a possible.
My wife and I have made a difficult decision and have decided that one of use either her or I will always be with grace at all times let me explain why,
We rarely got a babysitter ,the only people we would leave Grace with was Jill's mother or mine.
It was opening day of the horse races in Grand Prairie the track was probably 40 miles away , we had some friends with us ,another couple that we hung out with often at our house.
Grace had had a few seizures, not real severe ones ,just small twitches ,we really weren't convinced that they were even seizures .
We were about two races in when my mom called ,Grace is having a seizure and shes not breathing my mom has called 911 and the paramedics are there.
Now this is without a doubt the worst call a parent could get!!! We literally run as fast as we can to the car ,we drove 100 miles per hour at least, flashing our lights to get cars out of are way , we finally make it home, Grace is okay it was the worst seizure shes ever had at this point.
Afterwards we look back and realize a few things:1 We could have wrecked and killed both of us ,then were would Grace be? 2 When Grace has a critical moment, be it a seizure or whatever ,if shes ever scared mom or dad has to be there to hold her hand and talk her, tell her everything will be okay let her know we love her and we are there.
Look her Grand parents love her, but mom or dad will always be there.
Tuesday, July 5, 2011
Wednesday, June 22, 2011
diagnosis
When Grace was 4 months old we started to wean her off breast milk,while she was drinking her formula she seemed to cough, alot, too much.We took her to the doctor and after a swallow study they told use not to be alarmed ,that her throat muscles have not fully developed yet and that she was aspirating,this means that some of the liquid would go into her lungs instead of her stomach,they advised us to begin thickening her liquids and give it till she was a year old so that her throat muscles can develop fully.
I also need to make a shout out to ,well we will call it a MOTHERS INTUITION,during these coughing episodes my wife (Jill) new something was wrong and was very concerned I on the other hand was not so concerned and remember saying its just a little coughing.It was a little coughing all right, and before long the word concerned would be a serious understatement and soon replaced with fear.
Thickening her liquids seemed like a great idea ,we would start at a nectar consistency and before long we were in the hospital with pneumonia.This is very scary,why is this happening and again because of aspiration a nectar consistency was not enough so we began a honey consistency.and yes again we were told to give it till she was a year old to see if the muscles in her throat would develop and become stronger.
Again a mothers intuition steps in, Jill was steadily insisting that something was wrong,something is not right.
I on the other hand was, I guess in denial I wanted to believe the doctors so bad,her muscles were going to get stronger and everything was going to be ok.WRONG!!!
Before Grace turned 6 months old we were back in the hospital with pneumonia again and believe it or not there still blaming it on throat muscles not being developed and want her to begin a pudding consistency,we have no choice but to start the pudding consistency but were not waiting till shes 1.and its ridiculous to ask us too ,were starting to get pissed off at this medical team and insist on seeing a neurologist.
We are basically in an absolute panic at this point, I mean something is wrong with our daughter and we need to see a brain doctor,yes I was freaking out.
Grace was, I think meeting milestones at this point she was sitting up, babbling, rolling over however she was not pulling up or going from laying down to sitting on her own but she would sit up by herself if placed in a sitting position.
We made an appointment with a neurologist and a developmental pediatrician on the same day ,we went to the neurologist first who wanted to do a MRI and then do blood work.Why he wouldn't do the blood work immediately I don't know but I remember being pissed about it .I want answers, NOW!
but he wouldn't do them saying he didn't want blood work to interfere with his thinking while looking at the MRI.
I was thinking you are a brain doctor and that's too much multitasking for you!!
I finally gave up because I new we were going to this other doctor and now my full intention was to have her do the blood work.
We did make too much money for any kind of medical assistance and this developmental pediatrician did not accept our insurance.Her apt. was 500 and sum $s.oh yea believe it.
Believe it or not she would not do the blood work either she wanted to see the MRI results first as well,WHAT IS WRONG WITH THESE PEOPLE!
The day came for the MRI, this is serious my 6 month old daughter is about to get anesthesia and I have to sign something explaining the risk and say there not responsible.wtf.not cool.
They give her Valium so she will be calm when we hand her over.I keep telling my self this is just an MRI,my wife is crying I'm starting to cry and try not to show it ,we're there alone and its just an awful moment.
Time is going by, this is taking too long,something is wrong.
Grace is not coming out of anesthesia very well and is having trouble breathing.they wanted us in the recovery room so Grace could hear our voices,this went on for a couple hours and the all the sudden she was fine.NOW WE WAIT.waiting for results is something we would unfortunately get use to doing, if that's even possible.
Looking back I cant believe how we were treated I'm remembering that the results were in but we couldn't get a follow up apt. for like 2 months because the doc. was booked.
When we finally got the results we were so mad but soon very happy to hear that the results were normal and showed no abnormality.
This is awesome news but soon you realize, we still don't know whats wrong.
The neurologist is referring us to a metabolic doctor.
All these doctors are in the same hospital.
We made the apt. and the blood work is beginning.We would go, they'd take blood, weeks sometimes months would go by, they'd call its normal,normal,normal,normal more blood work normal,normal.
I'm getting pissed something is wrong its 2006 and you cant figure it out.wtf.
I just want to through in that I'm very thankful to know because there are thousands of parents out there that don't know, and may never know.So I for one will gladly count my blessing.
Eventually the doctor informed us that we had done all the blood work we could do and we may never know what was wrong.
Now this is a blow like no other, heart breaking ,there are no words to explain it.
There suggestion, a muscle biopsy,this is to me out of the question.NO WAY...
Grace is now 1 years old were still thickening her liquids and doing regular swallow studies nothing is getting better, we even tried this treatment called vital stem,but it didn't help.
then we got a letter in the mail from the doctor encouraging us to do the biopsy,telling us that they could most likely find out what is wrong this way and with out a diagnosis there is no treatment.
For the first time these doctors were making sense.
Terrified of the anesthesia we schedule the biopsy,and soon find ourselves in the hospital giving Grace Valium and preparing to hand her over again.OMG.
Knowing what happened last time ,this time is even worse.I cant believe I'm letting them do this to her!!!!!!!!
AND WE WAIT
Finally the results are in,the doctors calls Jill and tells her over the phone and schedules an apt...
Jill calls me and tells me that Grace has a mitochondrial disease her complex 4 only works at a 15% rate.I don't even know what that is.Never heard of it.we Have no clue what this means.
The doctor advises us to not look this up on the Internet because what we would find would not be good to read and we need a doctor to explain it.
Of course by the time i got home from work Jill had looked it up and was devastated and not completely understanding it.
I didn't know how to act,I was numb.
We went to the apt. only to hear that this doc. wasn't to familiar with this rare disease and referred us to fort worth but not before informing us that most, but not all children born with mitochondrial disease do not live beyond 2 years old, and those that do usually wont pass there teenage years.
This doctor really lacked in her bed side manor.
Needless to say we leave this doctors office pissed off and broken.
I cant explain how I felt I guess if your reading this blog you probably know the feelings, and if you don't, I pray you never do!!!!
Every 15 minutes a child is born that will develop mito by age 10.
MITOCHONDRIAL DISEASE IS NOT RARE!!!!!!!
.
I also need to make a shout out to ,well we will call it a MOTHERS INTUITION,during these coughing episodes my wife (Jill) new something was wrong and was very concerned I on the other hand was not so concerned and remember saying its just a little coughing.It was a little coughing all right, and before long the word concerned would be a serious understatement and soon replaced with fear.
Thickening her liquids seemed like a great idea ,we would start at a nectar consistency and before long we were in the hospital with pneumonia.This is very scary,why is this happening and again because of aspiration a nectar consistency was not enough so we began a honey consistency.and yes again we were told to give it till she was a year old to see if the muscles in her throat would develop and become stronger.
Again a mothers intuition steps in, Jill was steadily insisting that something was wrong,something is not right.
I on the other hand was, I guess in denial I wanted to believe the doctors so bad,her muscles were going to get stronger and everything was going to be ok.WRONG!!!
Before Grace turned 6 months old we were back in the hospital with pneumonia again and believe it or not there still blaming it on throat muscles not being developed and want her to begin a pudding consistency,we have no choice but to start the pudding consistency but were not waiting till shes 1.and its ridiculous to ask us too ,were starting to get pissed off at this medical team and insist on seeing a neurologist.
We are basically in an absolute panic at this point, I mean something is wrong with our daughter and we need to see a brain doctor,yes I was freaking out.
Grace was, I think meeting milestones at this point she was sitting up, babbling, rolling over however she was not pulling up or going from laying down to sitting on her own but she would sit up by herself if placed in a sitting position.
We made an appointment with a neurologist and a developmental pediatrician on the same day ,we went to the neurologist first who wanted to do a MRI and then do blood work.Why he wouldn't do the blood work immediately I don't know but I remember being pissed about it .I want answers, NOW!
but he wouldn't do them saying he didn't want blood work to interfere with his thinking while looking at the MRI.
I was thinking you are a brain doctor and that's too much multitasking for you!!
I finally gave up because I new we were going to this other doctor and now my full intention was to have her do the blood work.
We did make too much money for any kind of medical assistance and this developmental pediatrician did not accept our insurance.Her apt. was 500 and sum $s.oh yea believe it.
Believe it or not she would not do the blood work either she wanted to see the MRI results first as well,WHAT IS WRONG WITH THESE PEOPLE!
The day came for the MRI, this is serious my 6 month old daughter is about to get anesthesia and I have to sign something explaining the risk and say there not responsible.wtf.not cool.
They give her Valium so she will be calm when we hand her over.I keep telling my self this is just an MRI,my wife is crying I'm starting to cry and try not to show it ,we're there alone and its just an awful moment.
Time is going by, this is taking too long,something is wrong.
Grace is not coming out of anesthesia very well and is having trouble breathing.they wanted us in the recovery room so Grace could hear our voices,this went on for a couple hours and the all the sudden she was fine.NOW WE WAIT.waiting for results is something we would unfortunately get use to doing, if that's even possible.
Looking back I cant believe how we were treated I'm remembering that the results were in but we couldn't get a follow up apt. for like 2 months because the doc. was booked.
When we finally got the results we were so mad but soon very happy to hear that the results were normal and showed no abnormality.
This is awesome news but soon you realize, we still don't know whats wrong.
The neurologist is referring us to a metabolic doctor.
All these doctors are in the same hospital.
We made the apt. and the blood work is beginning.We would go, they'd take blood, weeks sometimes months would go by, they'd call its normal,normal,normal,normal more blood work normal,normal.
I'm getting pissed something is wrong its 2006 and you cant figure it out.wtf.
I just want to through in that I'm very thankful to know because there are thousands of parents out there that don't know, and may never know.So I for one will gladly count my blessing.
Eventually the doctor informed us that we had done all the blood work we could do and we may never know what was wrong.
Now this is a blow like no other, heart breaking ,there are no words to explain it.
There suggestion, a muscle biopsy,this is to me out of the question.NO WAY...
Grace is now 1 years old were still thickening her liquids and doing regular swallow studies nothing is getting better, we even tried this treatment called vital stem,but it didn't help.
then we got a letter in the mail from the doctor encouraging us to do the biopsy,telling us that they could most likely find out what is wrong this way and with out a diagnosis there is no treatment.
For the first time these doctors were making sense.
Terrified of the anesthesia we schedule the biopsy,and soon find ourselves in the hospital giving Grace Valium and preparing to hand her over again.OMG.
Knowing what happened last time ,this time is even worse.I cant believe I'm letting them do this to her!!!!!!!!
AND WE WAIT
Finally the results are in,the doctors calls Jill and tells her over the phone and schedules an apt...
Jill calls me and tells me that Grace has a mitochondrial disease her complex 4 only works at a 15% rate.I don't even know what that is.Never heard of it.we Have no clue what this means.
The doctor advises us to not look this up on the Internet because what we would find would not be good to read and we need a doctor to explain it.
Of course by the time i got home from work Jill had looked it up and was devastated and not completely understanding it.
I didn't know how to act,I was numb.
We went to the apt. only to hear that this doc. wasn't to familiar with this rare disease and referred us to fort worth but not before informing us that most, but not all children born with mitochondrial disease do not live beyond 2 years old, and those that do usually wont pass there teenage years.
This doctor really lacked in her bed side manor.
Needless to say we leave this doctors office pissed off and broken.
I cant explain how I felt I guess if your reading this blog you probably know the feelings, and if you don't, I pray you never do!!!!
Every 15 minutes a child is born that will develop mito by age 10.
MITOCHONDRIAL DISEASE IS NOT RARE!!!!!!!
.
Tuesday, June 21, 2011
seizures
I just want everyone to know that I am a plumber I do not have any experience in blogging.
With all the medical problems mito had caused Grace, the epilepsy is by far the most serious.
In the beginning Grace would have multiple small seizures a day probably 5,6,7 of them, but they were mild. Her mitochondrial specialist had warned us that she would probably develop epilepsy. We had no idea how severe the seizures would become.. We saw an epileptologist who started grace on Keppra a seizure medication,the dose prescribed really had no effect and the doc. kept increasing the dose ,eventually we were at a maximum dose of keppra and the seizures were still happening, maybe slowed a very little.
Eventually the doctor would prescribe another seizure medication called trileptal,we started on a low dose and began to increase the dose as time went on the seizures seemed to be less and less,however they began to be more severe,going from still conscious to non conscious and lasting longer than they were before starting the trileptal.We were going from 5,6,7 a day to 1 a day,these seizures began to become so severe Grace was prescribed Diastat a seizure recovery medication because the seizures would last sometimes 5 to 10 minutes.
We see a mitochondrial specialist here in Dallas and decided to make a trip to see another mito specialist in Huston.It was a good doctor visit and before leaving blood work was done.
Two days after getting home the doctor called and instructed us to rush Grace to the emergency room because her sodium levels were very low and were at extremely dangerous levels.
In a panic I rush home from work and we rush Grace to the e.r. her sodium levels were at 122,the normal range is 135 to 145. They start her on an iv to get her levels normal,it was decided that the trileptal was causing her levels to be low and they took her off the iv and lowered her dose of trileptal and her levels began to rise to the low 130's ,but still below normal.Yes lowering her trileptal increased her seizure activity, so the doctor prescribed another medication called Bansol, now Grace is on three different seizure medications, the doctors goal is to get Grace off the trileptal and then check her sodium levels.We are in the process of lowering her trileptal and I believe it is causing increases in her seizure activity.We have been down to about 1 to 2 a week with all three medications .
A few questions :
When are seizures under control ?
What frequency of seizures are acceptable?
Is 0 seizures a realistic goal?
Does anyone feel like the weather can cause seizures?
When you cant get an apt. with your epileptologist for 6 months is it time for a new one?
Seizures are the worst because there is nothing me as a parent can do just comfort her and hope that it stops.
As a father i need to be able to stop these from happening
I am here to protect her from everything and anything , if I could just get my hands on this mitochondria so i could fix it,make it better!!!!
The human body what an incredible design.
With all the medical problems mito had caused Grace, the epilepsy is by far the most serious.
In the beginning Grace would have multiple small seizures a day probably 5,6,7 of them, but they were mild. Her mitochondrial specialist had warned us that she would probably develop epilepsy. We had no idea how severe the seizures would become.. We saw an epileptologist who started grace on Keppra a seizure medication,the dose prescribed really had no effect and the doc. kept increasing the dose ,eventually we were at a maximum dose of keppra and the seizures were still happening, maybe slowed a very little.
Eventually the doctor would prescribe another seizure medication called trileptal,we started on a low dose and began to increase the dose as time went on the seizures seemed to be less and less,however they began to be more severe,going from still conscious to non conscious and lasting longer than they were before starting the trileptal.We were going from 5,6,7 a day to 1 a day,these seizures began to become so severe Grace was prescribed Diastat a seizure recovery medication because the seizures would last sometimes 5 to 10 minutes.
We see a mitochondrial specialist here in Dallas and decided to make a trip to see another mito specialist in Huston.It was a good doctor visit and before leaving blood work was done.
Two days after getting home the doctor called and instructed us to rush Grace to the emergency room because her sodium levels were very low and were at extremely dangerous levels.
In a panic I rush home from work and we rush Grace to the e.r. her sodium levels were at 122,the normal range is 135 to 145. They start her on an iv to get her levels normal,it was decided that the trileptal was causing her levels to be low and they took her off the iv and lowered her dose of trileptal and her levels began to rise to the low 130's ,but still below normal.Yes lowering her trileptal increased her seizure activity, so the doctor prescribed another medication called Bansol, now Grace is on three different seizure medications, the doctors goal is to get Grace off the trileptal and then check her sodium levels.We are in the process of lowering her trileptal and I believe it is causing increases in her seizure activity.We have been down to about 1 to 2 a week with all three medications .
A few questions :
When are seizures under control ?
What frequency of seizures are acceptable?
Is 0 seizures a realistic goal?
Does anyone feel like the weather can cause seizures?
When you cant get an apt. with your epileptologist for 6 months is it time for a new one?
Seizures are the worst because there is nothing me as a parent can do just comfort her and hope that it stops.
As a father i need to be able to stop these from happening
I am here to protect her from everything and anything , if I could just get my hands on this mitochondria so i could fix it,make it better!!!!
The human body what an incredible design.
Monday, June 20, 2011
intro
Grace Brewer is an adorable little girl with a mitochondrial complex IV deficiency which causes her to have very low muscle tone and very low energy levels.She is unable to crawl,walk,stand or sit unsupported.
Gracie's severe reflux and swallowing difficulties required that she have a nissen procedure and a G-tube,so she no longer eats food by mouth.Because of the low muscle tone in her throat,she still chokes and aspirates on her own saliva which requires constant vigilance. Gracie also has epilepsy and all of these problems have left her developmentally delayed.
Through it all Gracies is the HAPPIEST little girl with a fantastic personallity!!!!She is full of smiles and laughter,her big brother can make her belly laugh by just smiling back at her. She to babble,and all though she cannot yet say any words she tries very hard to cary on a conversation with you.she loves being read to and listening to nursery ryhmes.She,and loves beads and her favorite shows are doea the explorer and blues clues.
Graces days full and exciting for her with physical,occupational and speech,vision and the academic programs provided by the home-bound services of the local school district. She is blessed to have such
wonderful theropist and teachers that are dedicated and determind to teach her to walk and talk!!!
Mitochondria produce more than 90% of the bodys energy.when these tiny parts of the cell cant do there job,the body doesent get the energy it needs,resulting in a wide range of debilitating and sometimes fatal symptoms.Every thirty minutes,a child is born who will develop a mitochondrial disease by age 10.Most of these affected children will not survive beyond their teenage years.
these numbers are continunig to rise.
Grace Lavon Brewer is my Daughter she is 5 years old and I love her with all my hart.
My name is Joshua Brewer.
Gracie's severe reflux and swallowing difficulties required that she have a nissen procedure and a G-tube,so she no longer eats food by mouth.Because of the low muscle tone in her throat,she still chokes and aspirates on her own saliva which requires constant vigilance. Gracie also has epilepsy and all of these problems have left her developmentally delayed.
Through it all Gracies is the HAPPIEST little girl with a fantastic personallity!!!!She is full of smiles and laughter,her big brother can make her belly laugh by just smiling back at her. She to babble,and all though she cannot yet say any words she tries very hard to cary on a conversation with you.she loves being read to and listening to nursery ryhmes.She,and loves beads and her favorite shows are doea the explorer and blues clues.
Graces days full and exciting for her with physical,occupational and speech,vision and the academic programs provided by the home-bound services of the local school district. She is blessed to have such
wonderful theropist and teachers that are dedicated and determind to teach her to walk and talk!!!
Mitochondria produce more than 90% of the bodys energy.when these tiny parts of the cell cant do there job,the body doesent get the energy it needs,resulting in a wide range of debilitating and sometimes fatal symptoms.Every thirty minutes,a child is born who will develop a mitochondrial disease by age 10.Most of these affected children will not survive beyond their teenage years.
these numbers are continunig to rise.
Grace Lavon Brewer is my Daughter she is 5 years old and I love her with all my hart.
My name is Joshua Brewer.
Subscribe to:
Posts (Atom)