Everybody knows someone who knows someone...
It's been proven to a degree we're all connected. Some say by as little as 6 connections. Check facebook, linkedIn etc. we are all connected. need proof? check your friends lists. or even better see who shares your pediatrician. It will blow your mind.
This is where our journey intersects. Some people I've "met" and have been real friends with for a long time. Our friendships have been more real than some of my local friends,and although we've never met face to face...If they needed me to I'd hop on an airplane and try to be there if I could.. We've shared life. Our struggles, our victories, our sorrows, even some real secrets that not even best friends would share.
Which leads me to the thought Okay if we're all connected and know someone, why is it I feel like I'm spinning my wheels,so to speak, when it comes to finding a pediatric specialist who can answer some questions about what Jonathan is going through.
Someone has a great developmental or Genetics specialist who specializes in super rare genetic disorders. Our is 21q22.11 deletion.. We've been told there are a handful of people around the world who have this "change", but he and I are the only ones that have experienced any issues that can be tied to it.
Please Feel free to share our story. At this point we've totally hit a DEAD END.
We live by DFW airport so we would be willing to fly somewhere for a consult.
You might as well have told my husband and I that this diagnosis totally means nothing, and means that we are totally unable to talk to any specialist in the Dallas-Fort Worth metroplex....
Map
Yes,I said metroplex. Where I live there are not one, but TWO very large cities near us (almost equal distance between the two). What I am finding is there is very surely no shortage of pediatricians in the area, There are 2 major Children's hospitals...BUT there are only 2 very little (and very full) Developmental and Behavioral Pediatricians...and only 2 genetics programs here. Dallas Children's Hospital only serves developmental peds. patients until they are 5... where they go after that who knows. Maybe someone thinks they all vanish or maybe they send all the over 5 to psychology/Psychiatry. We've been turned away from that as well due to lack of space.
I'm going to scream. For real. as of right now I think we're still on a waiting list...unless something purely diabolical happens and I just end up firing our pediatrician. That is always a good option as the one we have is HORRIBLE and their staff sucks. all this pediatrician knows to do is follow a checklist..no bedside manner at all. I've suffered through a lot of different docs... this one is in the running for the worst...okay second worst. The neurologist we saw whilst getting Jonathan's diagnosis was BAD.
This all leaves me feeling very frustrated and feeling like the only person moving to Texas benefited was my husband. Yes, there are plenty of new jobs here, if you are willing to take the risk and move here. But if you have a child with a chronic condition...You might want to weigh your options very carefully.
Now we live another day to fight on.. Be blessed while we start at square 2 (square one has already been done),
Friday, July 13, 2012
Wednesday, June 27, 2012
I wouldn't Trade it
Living with my kids from day to day. Some days are stellar. Everyone is so happy, getting along. A few hugs and kisses make everything even sweeter.
There have been more than a few really difficult days, when I've been dealing with behavior from Jonathan, trying to correct Daniel hoping he understands what he did. and hoping Sarah's development is moving along..
There is also the whole thing of therapy, and a pediatrician. Both amaze me at how frustrated and sad I feel for my kids, who are supposed to be helped by these "professionals" and their behavior, but in the end it seems we were all born in the wrong place or born the wrong whatever. BALONEY SANDWICH.
I can't live with any regrets about what I did was the best thing for them or not. It's impossible to go into the past and change anything. It's not ever going to be possible. I have to make the best decisions based on the information I have,even if it means digging for it myself.
I wouldn't trade this experience for anything because I cannot. I love these kids more than life, and if I could I would take their place if I could.
The only thing is they have to experience life and learn to adapt to the challenges in front of them. They have to stumble and fall to learn to walk. They have to be a little bit wobbly at first but once they learn to balance, will find it easier to walk and run.
Yes, most days lately at my house find one or both my kids , sounding like they are learning english as a second language (because of their language delays their brain has been structured to think english is very hard).
On another note on Saturday last...Sarah took her first steps!!!!!!!! we are all over the moon... and when she did this there were instant cheers from her loyal cheering section Jonathan, Daniel and mommy. She gave me the biggest grin as she took a play vacuum and toddled off with more steps.
Jonathan is within a couple of days of losing his first tooth. For a six year old this is big. He can't wait to lose it. He has been wiggling it with his tongue.
We have decided not to move, although we have physical challenges with the kids and their low muscle tone(especially Jonathan) ... I've been carrying Sarah up and down 3 floors of stairs and she is getting to the point where she is too heavy. We will be saving money to put down on a down payment for a house or another apartment somewhere else closer to Andrew's work at The Container Store. We were going to be charged another extra hundred dollars a month for the privilege of not having 3 flights of stairs to clime in 105 degree heat dragging at least one child.
Andrew is training for a position that seems to be changing for the second shift that is growing. He is totally loving that and that is just Andrew's personality to have him create his own position.
Daniel although it's almost been two weeks has been constantly talking about the Birthday party he and I attended at a place that had a bounce house with a slide. He simply can't stop talking about it. We try not to roll our eyes too much as this was a great memory for him, but we need some ideas of other things we can do with him to create memories that will be better than the great one that he has. Please for the LOVE of all things SANE MAKE HIM stop this ONE story.
Okay maybe you're laughing now...but realize just how blessed you are.
Blessings
There have been more than a few really difficult days, when I've been dealing with behavior from Jonathan, trying to correct Daniel hoping he understands what he did. and hoping Sarah's development is moving along..
There is also the whole thing of therapy, and a pediatrician. Both amaze me at how frustrated and sad I feel for my kids, who are supposed to be helped by these "professionals" and their behavior, but in the end it seems we were all born in the wrong place or born the wrong whatever. BALONEY SANDWICH.
I can't live with any regrets about what I did was the best thing for them or not. It's impossible to go into the past and change anything. It's not ever going to be possible. I have to make the best decisions based on the information I have,even if it means digging for it myself.
I wouldn't trade this experience for anything because I cannot. I love these kids more than life, and if I could I would take their place if I could.
The only thing is they have to experience life and learn to adapt to the challenges in front of them. They have to stumble and fall to learn to walk. They have to be a little bit wobbly at first but once they learn to balance, will find it easier to walk and run.
Yes, most days lately at my house find one or both my kids , sounding like they are learning english as a second language (because of their language delays their brain has been structured to think english is very hard).
On another note on Saturday last...Sarah took her first steps!!!!!!!! we are all over the moon... and when she did this there were instant cheers from her loyal cheering section Jonathan, Daniel and mommy. She gave me the biggest grin as she took a play vacuum and toddled off with more steps.
Jonathan is within a couple of days of losing his first tooth. For a six year old this is big. He can't wait to lose it. He has been wiggling it with his tongue.
We have decided not to move, although we have physical challenges with the kids and their low muscle tone(especially Jonathan) ... I've been carrying Sarah up and down 3 floors of stairs and she is getting to the point where she is too heavy. We will be saving money to put down on a down payment for a house or another apartment somewhere else closer to Andrew's work at The Container Store. We were going to be charged another extra hundred dollars a month for the privilege of not having 3 flights of stairs to clime in 105 degree heat dragging at least one child.
Andrew is training for a position that seems to be changing for the second shift that is growing. He is totally loving that and that is just Andrew's personality to have him create his own position.
Daniel although it's almost been two weeks has been constantly talking about the Birthday party he and I attended at a place that had a bounce house with a slide. He simply can't stop talking about it. We try not to roll our eyes too much as this was a great memory for him, but we need some ideas of other things we can do with him to create memories that will be better than the great one that he has. Please for the LOVE of all things SANE MAKE HIM stop this ONE story.
Okay maybe you're laughing now...but realize just how blessed you are.
Blessings
Friday, May 18, 2012
My 20 minute Makeover-The Freezer-The Container Store
We live in an apartment... which means having to deal with a lack of freezer space and all of the accompanying issues associated with it.
Being that my husband works for a company called The Container Store(c), they sell stuff that can organize your life. This isn't my first project, but the first one that is complete. As you can see our freezer is just like anyone else's. I cannot tell you what is in the back of this thing and I dreaded looking for anything.
Lovely to see I have an amazing amount of room in here now. Rest assured now no more falling objects. My toes will thank me later.
My Door however, still needs help.
Monday, April 30, 2012
Bluebonnets, Butterflies and Cowboys
During the spring these flowers are seen along roadsides everywhere. I can hardly believe it still. Just trust me on this one. These flower pictures were taken a few days before we had a tornado outbreak...and no we weren't hyperventilating over a dust devil.These tornadoes were throwing around 18 wheeler trailers. We had 12 confirmed tornado touchdowns. ..That was surely the scariest day a lot of us had. It's a miracle there was no deaths in this whole event.
Be blessed and go enjoy the outdoors and enjoy the life you have.
Thursday, March 15, 2012
Happy 6th Birthday, Jonathan-March 16th 2012
We are so incredibly blessed beyond words.
The Day you were born: Thursday
The Day You were born: You made me a mommy. You also made Andrew a daddy.
This made us your parents.
We had waited a long time for your arrival.
Many people you don't know prayed for your arrival. They also prayed for you while you were sick.
The Bible verse that came to mind on your birthday: John 3:16. King James Version.
16For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.
17For God sent not his Son into the world to condemn the world; but that the world through him might be saved.
The Day you were born: was the day we were scared for you. It was also the day we fell in love with you.
The Day you were Born...You became our hero. All 8 pounds and 14 ounces of you.
The Video has been updated and changed
I praise God for the strength and the perseverance that he has given you each day.
We are so proud of the child you are becoming..and even more proud of the things that you have had to overcome. I love you and I promise I will never ever let you forget you are LOVED. You are important. and you can do anything.
So on this day my sweet Jonathan, please know we LOVE you!...
Hugs and Kisses
Mommy and Daddy
and Daniel and Sarah
Go to our link to support our Walk to honor Jonathan and many, many other young friends who were born too early, too sick, or had birth defects... Our walk is April 21, 2012 in Fort Worth, Texas.
March for Babies Page
Friday, February 24, 2012
Stuff no one taught me about Parenthood
There are a lot of things no one taught me about parenthood.
This week was one of those weeks as a parent you totally dread. Or at least I know I did.
Murphy's Law-(Hoover Edition Volume 1-
If you have no time for something to happen...something will happen to something, somebody to make sure you never over schedule again.
This week was a horribly over scheduled week, and you know what happens... Every time you have something that you've waited months for Jonathan to have a speech evaluation done and Sarah wakes up with the scariest allergic reaction I've ever seen with my own eyes. We spent the rest of the day in an Emergency room, and thus we had to cancel Jonathan's speech eval.
Monday we had therapy , Because I am unable to be omnipresent (able to be several places at once) we had a very important genetics appointment for Thursday.
Tuesday we had more therapy for Daniel. This time the 2nd therapist couldn't make it. She is only available there twice a week and so we couldn't reschedule.
Wednesday we were supposed to have Jonathan go to the same place that Daniel gets therapy at, but Sarah woke up with the worst allergic reaction to an unknown substance I've ever seen. She was suffering from a tummy bug as well. While we did everything we possibly could (bath, benadryl,lotion) with no relief. After getting Daniel off the bus, I decided that I needed some help for her. NOT knowing this area and where the kids urgent facilities are STINKS.
I have to thank my friend Brooks for being Daniel Relief while I dealt with Sarah in the ER.
Don't let the ADS fool you wait times are NOT a good indicator of great care. We got triaged and sent to a bed in a corner and left there for 90 mins before anything was done.. Meanwhile Sarah was hating everything and everybody. I felt badly but all she really wanted to do was scream.
I really would have been way better off being told I did the right thing and be sent home with the blessing and the mandate to call her pediatrician. It would have saved me from having to manage everyone and try to get someone to pick Jonathan up from school. The doctor didn't want to do anything other than repeat what I had already done.. The nurse there was sweet though and told me how to constructively complain..
Stuff Jonathan Taught me...
Alarm clocks...who needs that. I haven't used an alarm clock since before Jonathan was born. Occasionally, we need one when there is something out of the ordinary or when our schedule's been disturbed.
Schedules keep mommy sane....but in the same breath being flexible to adapt to stuff works too.
You are EVERYTHING for your child...including a coach and advocate... but sometimes you need help you have no idea about.
It's never too early to have the bully talk and what to do when one is in your life.
We have plenty and we're only five. I pulled him off the bus because of the verbal and physical abuse no one ever saw there. The principal of his school can do nothing about the bullying problem at her school and no amount of screaming will fix this. By the way, the bullying started the second day of school.
He's been pushed down more times in PE and at recess than I'd like.
I'm praying against anything happening to Jonathan when one of these mean little overweight ginourmous kids jump on him and try to wrestle. He is in the terms of our genetics specialist "floppy" and over flexible.
Don't feel guilty. Because by being sad, he won't undesrtand why mommy is sad , thus making him worry.
Are there times that I feel responsible for what Jonathan has had to endure? Sure... case in point talking to the genetics specialist yesterday. He kept pointing out that I am also a carrier of what he has. so yes and they have medical records to prove that. I have to always keep in mind that as his mom KNOWING what he has to endure daily and has first hand knowledge of this I double feel for him.. We are doing everything humanly possible to get him everything he needs.
I would be willing to take Jonathan and get on a plane and fly to somewhere if we thought anyone could help figure out how to help him. So far as we have been able to tell from different sources we are the 3rd and 4th case of this discovered since they've been mapping the human genome. We are one of the only cases where they've seen an issue regarding the part of the specific Chromosome.
If you happen to know of any Pediatric Children's hospitals that specialize in Developmental or Genetic medicine please let me know.
Which one is it?
The human genome is made up of 23 pairs of Chromosomes. With thousands of variations. Each pair has it's own special function... You get half of mom's genetics from the egg and half from the sperm at fertilization. But even if there are perfect sets, the process of division can cause problems.
One half of our pair on Chromosome 21 is missing some material. This is also the smallest chromosome in the whole genome.
The Location of our Deletion is 21q22.11.
Go ahead Google it. Even Google is CLUELESS. genetic scientists have found that some cancers and even Alzheimers can be located there... but this is NOT US. Trust me on this. Googling a condition before getting interpreted results is quite scary.
Currently I also pray for every time we have to go up and down several flights of stairs to get to our apartment. Daniel is currently in physical therapy trying to work on stairs.
Daniel will be tested for this. However, we have to wait for the Children's hospital to order special equipment so that they can look at the specific chromosome..
Our hope is that Daniel does NOT have this, as Andrew isn't a carrier.
As for us that is what's going on. I hope this helps someone because I feel we're at a low point right now...and we are so ready to go up from here.
Be Blessed
This week was one of those weeks as a parent you totally dread. Or at least I know I did.
Murphy's Law-(Hoover Edition Volume 1-
If you have no time for something to happen...something will happen to something, somebody to make sure you never over schedule again.
This week was a horribly over scheduled week, and you know what happens... Every time you have something that you've waited months for Jonathan to have a speech evaluation done and Sarah wakes up with the scariest allergic reaction I've ever seen with my own eyes. We spent the rest of the day in an Emergency room, and thus we had to cancel Jonathan's speech eval.
Monday we had therapy , Because I am unable to be omnipresent (able to be several places at once) we had a very important genetics appointment for Thursday.
Tuesday we had more therapy for Daniel. This time the 2nd therapist couldn't make it. She is only available there twice a week and so we couldn't reschedule.
Wednesday we were supposed to have Jonathan go to the same place that Daniel gets therapy at, but Sarah woke up with the worst allergic reaction to an unknown substance I've ever seen. She was suffering from a tummy bug as well. While we did everything we possibly could (bath, benadryl,lotion) with no relief. After getting Daniel off the bus, I decided that I needed some help for her. NOT knowing this area and where the kids urgent facilities are STINKS.
I have to thank my friend Brooks for being Daniel Relief while I dealt with Sarah in the ER.
Don't let the ADS fool you wait times are NOT a good indicator of great care. We got triaged and sent to a bed in a corner and left there for 90 mins before anything was done.. Meanwhile Sarah was hating everything and everybody. I felt badly but all she really wanted to do was scream.
I really would have been way better off being told I did the right thing and be sent home with the blessing and the mandate to call her pediatrician. It would have saved me from having to manage everyone and try to get someone to pick Jonathan up from school. The doctor didn't want to do anything other than repeat what I had already done.. The nurse there was sweet though and told me how to constructively complain..
Stuff Jonathan Taught me...
Alarm clocks...who needs that. I haven't used an alarm clock since before Jonathan was born. Occasionally, we need one when there is something out of the ordinary or when our schedule's been disturbed.
Schedules keep mommy sane....but in the same breath being flexible to adapt to stuff works too.
You are EVERYTHING for your child...including a coach and advocate... but sometimes you need help you have no idea about.
It's never too early to have the bully talk and what to do when one is in your life.
We have plenty and we're only five. I pulled him off the bus because of the verbal and physical abuse no one ever saw there. The principal of his school can do nothing about the bullying problem at her school and no amount of screaming will fix this. By the way, the bullying started the second day of school.
He's been pushed down more times in PE and at recess than I'd like.
I'm praying against anything happening to Jonathan when one of these mean little overweight ginourmous kids jump on him and try to wrestle. He is in the terms of our genetics specialist "floppy" and over flexible.
Don't feel guilty. Because by being sad, he won't undesrtand why mommy is sad , thus making him worry.
Are there times that I feel responsible for what Jonathan has had to endure? Sure... case in point talking to the genetics specialist yesterday. He kept pointing out that I am also a carrier of what he has. so yes and they have medical records to prove that. I have to always keep in mind that as his mom KNOWING what he has to endure daily and has first hand knowledge of this I double feel for him.. We are doing everything humanly possible to get him everything he needs.
I would be willing to take Jonathan and get on a plane and fly to somewhere if we thought anyone could help figure out how to help him. So far as we have been able to tell from different sources we are the 3rd and 4th case of this discovered since they've been mapping the human genome. We are one of the only cases where they've seen an issue regarding the part of the specific Chromosome.
If you happen to know of any Pediatric Children's hospitals that specialize in Developmental or Genetic medicine please let me know.
Which one is it?
The human genome is made up of 23 pairs of Chromosomes. With thousands of variations. Each pair has it's own special function... You get half of mom's genetics from the egg and half from the sperm at fertilization. But even if there are perfect sets, the process of division can cause problems.
One half of our pair on Chromosome 21 is missing some material. This is also the smallest chromosome in the whole genome.
The Location of our Deletion is 21q22.11.
Go ahead Google it. Even Google is CLUELESS. genetic scientists have found that some cancers and even Alzheimers can be located there... but this is NOT US. Trust me on this. Googling a condition before getting interpreted results is quite scary.
Currently I also pray for every time we have to go up and down several flights of stairs to get to our apartment. Daniel is currently in physical therapy trying to work on stairs.
Daniel will be tested for this. However, we have to wait for the Children's hospital to order special equipment so that they can look at the specific chromosome..
Our hope is that Daniel does NOT have this, as Andrew isn't a carrier.
As for us that is what's going on. I hope this helps someone because I feel we're at a low point right now...and we are so ready to go up from here.
Be Blessed
Friday, January 27, 2012
Happy 1st (Belated) Birthday Sarah Grace
Sarah Grace's first Birthday Cake...
In our family on a child's first birthday we allow and encourage the birthday person to eat and smash a small cake. And since our grocery store had a coupon we got the smash cake free when we bought another one.
She is a very happy and amazing little girl, who last night was playing with Jonathan, like they were taking pictures and she said: Chee(se).
You are Amazing Sarah. We Love and adore you our beautiful princess (in a house full of boys).
Love Mom and Dad
Be Blessed.
(we have some of the most amazing friends and family all over the place that we love and MISS)
HUGS to all
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