Missing. This is a word that no parent ever wants to hear. But we did. We were told that our middle son, Benjamin was missing. Benjamin is our 7yr old who is Autistic, has OCD, Anxiety and Sensory Integration disorder.
We told Ben and his teacher that we would be picking him up at the end of the day on thursday and that we would all meet in the office. They said great he will meet you there. His other siblings came but Ben never did. They searched the buses 3 times. No Ben. They called the bus company to search the buses 2 times. No Ben. All pages thru the school. No Ben. All of us looking all over the school and playground. No Ben. Looking in parked car windows. No Ben. Finally after 45 minutes of no Ben the principal and I called the police. 8 or 9 police showed up.
Did I mention it was 50 degrees, pouring rain, and Ben was last seen in shorts and a tshirt? He's only 45ish lbs, skin and bones.
Finally after an hr of searching my nurse called and said that Ben made it home. He had gotten on the wrong bus and then since it was raining he said the windows were so foggy that he couldn't see anything so he didn't know where he was and where he was going. He said that he heard his name over the loud speaker and that he tried to talk back but that we couldn't hear him.
The school openly admits to dropping the ball. Police reports were filed as well as reports with the district. Currently they are having someone walk Ben straight to and from his bus and we will be meeting on Wednesday to discuss a permanent plan.
I hope to never hear those words again.
Tuesday, September 18, 2012
Saturday, September 15, 2012
Pictures from the Mito Walk
 |
| Walk or not we still get to do medical stuff! Someone tiny was having issues with not peeing, he had no bowel sounds and diminished lung sounds in the lower lobes. |
 |
| eli got to walk the beginning lap of the 3k walk! |
Thursday, September 13, 2012
Fundraiser Totals
I'm exhausted so this will be a very short update. The day started out well, although emotional, got VERY rough in the middle, and ended decently. I will get full info up tomorrow but for now here are the numbers.
The school fundraiser is finished. The money is totalled. We are beyond humbled. They raised .....DRUMROLL.....
$828.55!!!!!!
My kids have raised a total of $1,105.55 for the UMDF Energy for Life walk this year!!!!
We are amazed by our kids and amazed by their school community!
The school fundraiser is finished. The money is totalled. We are beyond humbled. They raised .....DRUMROLL.....
$828.55!!!!!!
My kids have raised a total of $1,105.55 for the UMDF Energy for Life walk this year!!!!
We are amazed by our kids and amazed by their school community!
Thursday Announcements
Thursday
Mitochondrial
disease is the body’s failure to turn food into energy.
Mitochondrial
disease is underlying in many different illnesses. Some of these are cancer, alzheimer’s,
parkinson’s and many more.
Eli and so many
other mito children and adults are warriors.
Eli is our families superhero.
Battling each day to stay strong.
How can you
help those with mitochondrial disease?
You can
raise money for research and patient support just like you have done this week.
You can tell
your family and friends what mitochondrial disease is.
And you can
join our family for a fundraiser walk on Saturday, September 15th at
the TBones Stadium.
Our family would
like to thank you for the outpouring of support and generosity this week. We are forever blessed.
You can
continue to follow Eli’s journey on the blog or by simply asking whenever you see
us in school.
You can join our team or make an online donation by clicking HERE for Team Eli's Journey
Wednesday, September 12, 2012
Wednesday Morning Announcements
Damaged
(sick) mitochondria can cause children and adults to have problems in making
their bodies work.
Mitochondrial
disease is NOT contagious, which means you cannot catch it by touching or being
near someone with the disease.
It is a
genetic disease, which means it is part of your family’s health history.
Currently
there is no cure for mitochondrial disease.
Our family wishes every day for a cure, as do so many other families out
there.
This fundraiser
goes to helping learn more about Mito and to help try to find a cure.
Remember to
continue bringing in change and bills to and placing them in your donation bins
in your classroom. Remember that the
winning classroom wins a pizza party!
Tomorrow is
the last day to bring in your donations and it is also the day to wear
green! Green is the mitochondrial
disease awareness color!
Remember if
you ever see Eli in the halls of our school, remember that he loves to talk and
play and that you can’t get sick from talking and playing with him! He enjoys books and laughing and having
fun! Feel free to say hello!
Tuesday, September 11, 2012
Eli updates & thoughts & emotions
I'm sorry I didn't get a post up yesterday evening. I'm exhausted. Like always...physically, emotionally and mentally.
There are so many days lately where I'm simply unsure how we are going to get thru. Then we get thru the hectic roughness of the morning. I make it thru all of the medical pieces that remind me how sick my little guy is. We make it to that sweet spot time, his Pinocchio time. I live for this time, our whole family does. Everything about the other 18 hrs is simply making it to our next chunk of Pinocchio time.
For those new to Eli's journey I will stop quickly to explain. Pinocchio time is Eli's "I've got no strings" time. This is the little precious time of our life each day where he is unhooked from everything. All of his medical paraphernalia is in his room or tucked under his shirt. He's able to run and play independently without someone right behind him holding his tubes and machines. He climbs on the couch, chases the puppy, tumbles around on the floor with the kids, gets into trouble dumping my purse and his diaper bag all over the floor, and digs thru the kitchen cabinets and drawers. This is his time to be a toddler. Don't get me wrong we still have to do medical things. He gets meds and flushes and blood sugars every hr during this time. But we do it as quickly as possible chasing him thru the house to get it done. It's not just HIS Pinocchio time, it's OUR Pinocchio time.
Why am i down you may ask? Last weeks lab work is showing more signs of trouble. Out of a page of labs only 3 or 4 things were within normal range. His protein is at an all time low. His red blood cells are dilated. His hemoglobin is making big drops. It's just one lab result after another. His doctor and I spoke at length. He personally called me to talk. He says that we are going to have to make quality of life decisions and we can no longer continue to chase numbers. He says that we are going to have to pick. The hydration is causing Eli's body to flush out things it should be holding on to. We are going to have to decide between good numbers on lab work or hydration. Clearly neither is a good choice. No parent wants to pick from 2 important needed things. We are having to make a choice that helps part of Eli but hurts another part of him. It's not fair. It's not fair that we keep hearing that we need to make quality of life choices for Eli. I don't want to do this. I can't do this. But I have been given no choice. His doctor has adjusted Eli's IV fluids and that has helped with some of his numbers, but not enough, and presumably not for long enough.
I watch Eli and sometimes I laugh and smile. Sometimes my heart swells to the point of feeling like it is going to burst. Sometimes it hurts. It hurts so damn bad. I used to feel numb. When I was numb I never understood it and wished to feel. But feeling isn't always good either. The roller coaster of emotions that come with this. It's the hardest most painful thing in the world.
People are always asking us how we do it. They are always saying they could never do it. But they would. What else would you do?! Walk away, leaving your child laying on a hospital bed alone?? You do it. You give your entire self over to the journey. You sacrifice every molecule of yourself, willing and fully. I'm not saying this as a martyr type of mentality. I'm saying this as a mother. My sole job is fighting for my little man. Carrying him when he can't. Being his voice, his protector, his everything.
Every morning I look at Eli and marvel at how amazingly strong he is. He is a warrior, thru and thru. I have no idea how he endures what he does each day. I am continually amazed at his strength and determination and his accomplishments. He is my hero.
It's not just me that has these feelings. Everyone in our household will say these same things if asked. My 9yr old, Jace, has been working on keeping his own journal. He allows us to read it and the other night he wrote some incredibly deep painful insightful perfect words, that I feel like I need to share.
"I have a baby brother that has a disease called Mitochondrial. It is like a battery that does not charge. So they say that he may not live very long but we all love him a lot. It is sad that he might die when he is a teenager. We are currently raising money for the walk-a-thon. right now we raised over $200 which is a lot especially to me since I am bankrupt. I love my baby brother and I play with him because he is so cute."
To Jace this sums it all up. His baby brother is his world. He is the great emotional protector. He is always making sure that everyone he meets knows exactly how amazing his little brother is.
They are all like this. They are amazing. The things they know. The things that they understand and pick up on. It breaks my heart to know what they are having to endure. How strong they are. Not one single day have they complained about Eli and how he has changed our life. They are so proud of him, and so in love with him.
Our household is strong. We are close and tight. We can function like a well oiled machine at the drop of a hat when needed. My kids can be as hyper and out of control as can be, and the moment there is an Eli issue everyone can fall in and do what needs to be done with virtually no communication in seconds. It's amazing.
Our household consists of the 7 of us who are immediately in our family, 2 nurses, and 1 respite worker. We are all tight. I can't imagine life without our in home community. We are so blessed to have this group. We laugh together, cry together, and get into water gun fights with 60ml syringes together. We are family, in this thru the good and bad.
I will spend these next two weeks sorting thru a truckload of emotions. This week being the awareness week and fundraiser at my kids school, and next week being world wide Mitochondrial disease awareness week. We are mourning those lives lost, we are wrapping our arms around the families at the end of their journey, the families struggling, the families going thru the diagnosis process. We are joyfully thankful for the milestones and accomplishments not matter how small. We are mourning our losses and thankful for our Pinocchio time. Every day is a grieving process and a joyful time all swirled and blurred into one, but on weeks like these it is so much more defined as we focus even deeper.
We are forever thankful to our communities. Our in home community, our school community, our teams, our families, our friends, and our Mito families.
I will keep updating as often as possible. Life is busy. Sometimes the news is to painful for me to immediately process and then turn around and type up on the blog. Sometimes I simply don't have the energy to get it done. Like we have always said at any time you are wanting an update please feel free to call or email or text!
More soon!
There are so many days lately where I'm simply unsure how we are going to get thru. Then we get thru the hectic roughness of the morning. I make it thru all of the medical pieces that remind me how sick my little guy is. We make it to that sweet spot time, his Pinocchio time. I live for this time, our whole family does. Everything about the other 18 hrs is simply making it to our next chunk of Pinocchio time.
For those new to Eli's journey I will stop quickly to explain. Pinocchio time is Eli's "I've got no strings" time. This is the little precious time of our life each day where he is unhooked from everything. All of his medical paraphernalia is in his room or tucked under his shirt. He's able to run and play independently without someone right behind him holding his tubes and machines. He climbs on the couch, chases the puppy, tumbles around on the floor with the kids, gets into trouble dumping my purse and his diaper bag all over the floor, and digs thru the kitchen cabinets and drawers. This is his time to be a toddler. Don't get me wrong we still have to do medical things. He gets meds and flushes and blood sugars every hr during this time. But we do it as quickly as possible chasing him thru the house to get it done. It's not just HIS Pinocchio time, it's OUR Pinocchio time.
Why am i down you may ask? Last weeks lab work is showing more signs of trouble. Out of a page of labs only 3 or 4 things were within normal range. His protein is at an all time low. His red blood cells are dilated. His hemoglobin is making big drops. It's just one lab result after another. His doctor and I spoke at length. He personally called me to talk. He says that we are going to have to make quality of life decisions and we can no longer continue to chase numbers. He says that we are going to have to pick. The hydration is causing Eli's body to flush out things it should be holding on to. We are going to have to decide between good numbers on lab work or hydration. Clearly neither is a good choice. No parent wants to pick from 2 important needed things. We are having to make a choice that helps part of Eli but hurts another part of him. It's not fair. It's not fair that we keep hearing that we need to make quality of life choices for Eli. I don't want to do this. I can't do this. But I have been given no choice. His doctor has adjusted Eli's IV fluids and that has helped with some of his numbers, but not enough, and presumably not for long enough.
I watch Eli and sometimes I laugh and smile. Sometimes my heart swells to the point of feeling like it is going to burst. Sometimes it hurts. It hurts so damn bad. I used to feel numb. When I was numb I never understood it and wished to feel. But feeling isn't always good either. The roller coaster of emotions that come with this. It's the hardest most painful thing in the world.
People are always asking us how we do it. They are always saying they could never do it. But they would. What else would you do?! Walk away, leaving your child laying on a hospital bed alone?? You do it. You give your entire self over to the journey. You sacrifice every molecule of yourself, willing and fully. I'm not saying this as a martyr type of mentality. I'm saying this as a mother. My sole job is fighting for my little man. Carrying him when he can't. Being his voice, his protector, his everything.
Every morning I look at Eli and marvel at how amazingly strong he is. He is a warrior, thru and thru. I have no idea how he endures what he does each day. I am continually amazed at his strength and determination and his accomplishments. He is my hero.
It's not just me that has these feelings. Everyone in our household will say these same things if asked. My 9yr old, Jace, has been working on keeping his own journal. He allows us to read it and the other night he wrote some incredibly deep painful insightful perfect words, that I feel like I need to share.
"I have a baby brother that has a disease called Mitochondrial. It is like a battery that does not charge. So they say that he may not live very long but we all love him a lot. It is sad that he might die when he is a teenager. We are currently raising money for the walk-a-thon. right now we raised over $200 which is a lot especially to me since I am bankrupt. I love my baby brother and I play with him because he is so cute."
To Jace this sums it all up. His baby brother is his world. He is the great emotional protector. He is always making sure that everyone he meets knows exactly how amazing his little brother is.
They are all like this. They are amazing. The things they know. The things that they understand and pick up on. It breaks my heart to know what they are having to endure. How strong they are. Not one single day have they complained about Eli and how he has changed our life. They are so proud of him, and so in love with him.
Our household is strong. We are close and tight. We can function like a well oiled machine at the drop of a hat when needed. My kids can be as hyper and out of control as can be, and the moment there is an Eli issue everyone can fall in and do what needs to be done with virtually no communication in seconds. It's amazing.
Our household consists of the 7 of us who are immediately in our family, 2 nurses, and 1 respite worker. We are all tight. I can't imagine life without our in home community. We are so blessed to have this group. We laugh together, cry together, and get into water gun fights with 60ml syringes together. We are family, in this thru the good and bad.
I will spend these next two weeks sorting thru a truckload of emotions. This week being the awareness week and fundraiser at my kids school, and next week being world wide Mitochondrial disease awareness week. We are mourning those lives lost, we are wrapping our arms around the families at the end of their journey, the families struggling, the families going thru the diagnosis process. We are joyfully thankful for the milestones and accomplishments not matter how small. We are mourning our losses and thankful for our Pinocchio time. Every day is a grieving process and a joyful time all swirled and blurred into one, but on weeks like these it is so much more defined as we focus even deeper.
We are forever thankful to our communities. Our in home community, our school community, our teams, our families, our friends, and our Mito families.
I will keep updating as often as possible. Life is busy. Sometimes the news is to painful for me to immediately process and then turn around and type up on the blog. Sometimes I simply don't have the energy to get it done. Like we have always said at any time you are wanting an update please feel free to call or email or text!
More soon!
 |
| Here is us. This is our Family. On the left is Lauren, Eli's primary nurse. Ari is on her lap. Then Me and Bob in front holding Eli. Jace is laying on the bed. Next to me is Lindsay, Eli's nurse. In front of her is Michaella, Ben's respite worker. In front of her is Emily and Ben is in Emily's lap. |
Tuesday Morning Announcements
Mitochondria are like tiny batteries within our cells.
Have you ever tried to use something that wouldn't work properly because the batteries were dying?
That's what a person's body is like that his mitochondrial disease.
A new (healthy) battery generates energy for boom boxes, cameras, and flashlights - producing light, sound, and photographs.
An old (sick) battery has a lot of trouble making your things work.
Eli is not
able to eat. He’s not able to swallow
food and his stomach doesn’t work to process the food either. Because of this Eli has a special feeding
tube that feeds his intestines.
Eli’s eyes
and ears don’t work well either. He has hearing
aids and glasses that help him see and hear.Eli learned to walk recently and is now able to walk and play with us more. He enjoys chasing us and playing with his new puppy.
Please
remember all week to bring in your change and place it in the collection bins
in each classroom! The class to collect
the most money wins a pizza party!
Monday, September 10, 2012
School Awareness Week and Mito Drive Day 1
We all have Mitochondria.
They exist in nearly every cell of the human body
Mitochondria generate 90% of the energy the body needs to see, hear, walk, and breath.
Eli’s Mitochondria do not work the way yours and mine do. That is why he has 14 parts of his body not working properly, is on 62 medications and treatments a day, uses 13 pieces of medical equipment and sees 37 doctors. He also reads around 20 books a day, and pulls out 2 bookshelves full of toys each day scattering them all over the house for us to step on!
They exist in nearly every cell of the human body
Mitochondria generate 90% of the energy the body needs to see, hear, walk, and breath.
Eli’s Mitochondria do not work the way yours and mine do. That is why he has 14 parts of his body not working properly, is on 62 medications and treatments a day, uses 13 pieces of medical equipment and sees 37 doctors. He also reads around 20 books a day, and pulls out 2 bookshelves full of toys each day scattering them all over the house for us to step on!
Please
remember all week to bring in your change and place it in the collection bins
in each classroom! The class to collect
the most money wins a pizza party!
Above was the morning announcements. We passed out all of the donations bins to the classrooms, hung posters, made the announcements, and chatted with the principal and office staff. It was a great time and the kids are so excited.
I am running in circles this evening but will get a full update up on Eli this evening hopefully. Alot is going on with Eli and I know that everyone is always anxiously awaiting Eli updates so I promise to get one up tonight!
Friday, September 7, 2012
Welcome Brookridge Families!!!
Today fliers went out at school! I wanted to put together some basic information all in one easy place for you to read as you go thru the fliers and hear your kiddos stories of what they are learning next week during Brookridge's Mito Awareness week and fundraiser!
First our family would like to thank you! The brookridge family is amazing! Our kids are so blessed to be involved in such an amazing community that is willing to learn and raise awareness about Mitochondrial disease and so willing to fundraise and help the cause!
Secondly we would like to give the parents some insight into what your kids will be learning about. Each morning there will be announcements with information about Mito. Below is the Mito facts that will be given. Each day there will be snipets of information about Eli as well. I will post those details here on my blog each day.
Wednesday, September 12, 2012
Thursday, September 13, 2012
Lastly here are some pictures that the kids will be seeing to help understand a bit more about Eli's journey!
Eli's special bed that helps him sleep upright and safely. Also his oxygen tank, IV pole, and medical equipment required for sleeping safely.
Eli's medical equipment storage, and 2 fridges to store some medication and all of his IV fluids. Shelving to store out of fridge meds. And no little boys room is complete without a toy shelf!
Eli has to wear a special mask when he is in public. This is not because he is sick, it's because so many others are carrying germs that they might not even realize that they are carrying. Eli's immune system isn't strong enough to fight off things like a healthy person.
Eli in his wheelchair! He's able to walk now but tires easily and isn't able to keep up in a public place. This allows him to be able to move around quickly and easily, but is low to the ground so he can be close to other kids his age!
Eli with his O2 canulas. He is on oxygen when he sleeps and during the day when he's having trouble moving enough air on his own. They just sit right inside of his nose and tuck behind his ears.
Eli with his portable O2 tank. It holds liquid oxygen. We can refill this tank off of the large metal tank(seen in the bedroom picture by his crib). This allows him to breath easier by giving him extra support.
Eli using a nebulizer with a mask. This gives him medication that helps open up his lungs so that he can breath better. His mask is in the shape of a dinosaur and some are fish.
Elis eyes aren't as good as most people. One eye doesn't work very well at all so he wears a patch over his good eye each day to help his bad eye start to work more. He always wears glasses to help him see.
Eli's ears don't work as well, and it is also harder for his brain to process what his ears are hearing. He's able to wear hearing aids to help him hear better!
Eli's throat and stomach don't work. Because of this he has a feeding tube called a GJ tube that goes into his stomach. His tube allows us to drain his stomach and then it has a long tube that goes down into his jejunum (his intestines) and that is where Eli gets his food. He is on a special formula that is elemental (no allergins) and predigested. This helps his body not have to use so much energy to process his food.
Because Eli can't eat he has a special cake that lights up and plays music that he uses for his birthdays!
On the bottom is Eli's GJ feeding tube hooked up to his formula. The top is called a Hickman, which is a central line. This is a special long term IV that goes straight into his heart. This allows us to give Eli all of his water and some medications and it also allows us to be able to draw labs without having to stick him each time.
This is Eli with his feeding pump and food bag on the left and his IV pump and fluids on the right. He keeps all of these items in one large bag that we are able to carry around so that he can move about. He is on both of these pumps for 18 hrs each day.
These are Eli's feet. Walking can be hard for him and these special leg braces called AFO's (ankle foot orthotic) that are able to help give him more support while walking.
In closing! :) Feel free to visit by blog, especially these next 2 weeks. Next week I will be posting updates from the school events and daily information about Mito as it pertains to Eli and our family. The following week I will be posting daily logs of life inside of a Mito family!
Feel free to look around our blog and enjoy!
Again thank you for being such an amazing community for our family!
First our family would like to thank you! The brookridge family is amazing! Our kids are so blessed to be involved in such an amazing community that is willing to learn and raise awareness about Mitochondrial disease and so willing to fundraise and help the cause!
Secondly we would like to give the parents some insight into what your kids will be learning about. Each morning there will be announcements with information about Mito. Below is the Mito facts that will be given. Each day there will be snipets of information about Eli as well. I will post those details here on my blog each day.
Monday, September 10, 2012
·
We all have mitochondria.
·
They exist in nearly every cell of the
human body.
·
Mitochondria generate 90 percent of
the energy the body needs to see, hear, walk, and breathe.
Tuesday, September 11, 2012
·
Mitochondria are like tiny batteries
within our cells.
·
Have you ever tried to use something
that wouldn’t work because the batteries were dying?
·
That’s what a person’s body is like
that has mitochondrial disease.
·
A new (healthy) Battery generates
energy for boom boxes, cameras, and flashlights – producing light, sound, and
photographs.
·
An old (sick) Battery has a lot of
trouble making your things work.
·
Damaged (sick) mitochondria can cause
children and adults to have problems in making their bodies work.
·
Mitochondrial disease is NOT
contagious, which means you cannot catch it by touching or being near someone
with the disease.
·
It is a genetic disease, which means
it is part of your family’s health history.
·
Mitochondrial disease is the body’s
failure to turn food into energy.
·
How can you help those with
mitochondrial disease?
·
Tell your family and friends what
mitochondrial disease is.
·
And, join the Tomkins family for a fundraising
walk on Saturday, September 15 at the
T-Bones Stadium.
T-Bones Stadium.
The kids will have an opportunity to bring change (and bills or checks made out to the UMDF) to their classrooms each day and place it in their class buckets. The class who collects the most will win a pizza party!
On thursday the kids are encouraged to wear green, which is the awareness color for Mitochondrial Disease.
There will be an Energy for Life walk here in KC on the 15th of September. You can join our team as an in person walker, virtual walker, or make a direct donation to our team By clicking HERE
You can learn more about Mitochondrial Disease by visiting UMDF or MitoAction. Also please feel free to contact us with any questions that you may have!
Our family is always wishing for a cure!
Eli has to wear a special mask when he is in public. This is not because he is sick, it's because so many others are carrying germs that they might not even realize that they are carrying. Eli's immune system isn't strong enough to fight off things like a healthy person.
In closing! :) Feel free to visit by blog, especially these next 2 weeks. Next week I will be posting updates from the school events and daily information about Mito as it pertains to Eli and our family. The following week I will be posting daily logs of life inside of a Mito family!
Feel free to look around our blog and enjoy!
Again thank you for being such an amazing community for our family!
Tuesday, September 4, 2012
Primary Care Doc Appt Update
Today we met with Eli's primary doctor. We spent 1 1/2 hrs talking thru the most recent changes and going over some of the things that need to be immediately addressed.
1. We discussed Eli's lovenox. His levels are a drop over and the dosing is a real struggle. Right now it's coming in prefilled syringes made for adults. Eli clearly needs a much smaller dose. It's rough dosing accurately. He is going to work with the pharmacist to get it switched over to glass vials to draw ourselves. He is also going to continue weekly lovenox levels until we are at a safer dosing point.
2. Eli has been having a few mild nose bleeds but ANY bleeds with a kiddo on blood thinners is scary. We've had to restart one of Eli's meds for his sleep apnea, but it's a nose spray so this is obviously increasing nose bleed risk. His doc wants us to try some new drops to help keep his nose over moist.
3. We discussed the liver. The last rounds of lab work didn't look bad. Still elevated but not near as much. He is unsure if moving ahead with a liver biopsy at this point is a good idea. Being so new and still trying to get stabilized on blood thinners is a bit of a concern with a liver biopsy. We are going to start doing liver blood draws weekly instead of twice a month.
4. He has put a cap on how much blood can be drawn from the line weekly. Everyone has been gung ho to get all of their labs drawn, but Eli is paying the cost. His hemoglobin is dropping quickly and it's causing alot of energy issues for him.
5. We discussed Eli's central mixed sleep apnea. He is in agreement with the pulmonologist at this point. Eli will move forward with meeting with the ENT and most likely a plastic surgeon. Their thoughts are remove his tonsils and adnoids, dialate his nasal passages, place tubes in his ears and do his bronch all under one anesthesia. Everyone is in agreement that the sleep issue really needs dealt with next on the list.
6. He is leaving 1 dose of iron a day and will redraw labs in 3 weeks. Trying to see if we can find the balance of not overloading him with iron, but also keep his ferritin levels up.
7. We talked kidneys. He wants to get a firm plan in place before the end of the year as to what surgery and when and all that good stuff. This surgery has been a long time coming and I'm still no more ready now than I was when we found out about his kidney problems during my 18wk ultrasound.
8. Lastly we are going to be making some changes to Eli's hypoglycemia protocol. This will be our first change since Eli was diagnosed with his adrenal insufficiency and started his daily hydrocortisone. We are going to begin weaning off the cornstarch. If Eli struggles maintaining his sugars then we most likely switch his IV fluids from 1/2 NS to D5. We are going to wearn the cornstarch slowly so we are hoping that will help with no dramatic dumps.
They have put in all of his orders for the med changes, lab changes, and all of those things. We will get it all transitioned over in the next few days.
Eli is still struggling thru this cold and we are having to do a decent bit of rescue nebulizer treatments as well as a few extra cough assists. Luckily hydration hasn't been an issue.
The older 4 are doing well. The biggest 2 have been busy as ever fundraising for Eli's Energy for Life team. They are up to $264 on their own! They also put together a poster and fundraising project and presented it to their principal today. She is so excited about the fundraiser and awareness week. Each class will have a competition collecting coins (and bills) and the winning class wins a pizza party. They will also have awareness facts each day as well as a Wear Green for Mito awareness day. The kids are working on a poster to present to the class so they can better understand all of Eli's issues and equipment when they see him. We are so very proud of them and Eli is so blessed to have siblings who love him unconditionally!!
Today was my eye doc appt. My eyes are a mess. Which I was already knowing on my own. My doc has ordered some special contacts and glasses for me, as well as some new prescription drops. He warned that it's going to take my eyes awhile to try and adjust but he's hoping to be able to bring me some relief.
All the adults in the house are still sick with this darned cold as well. It just seems to hang on.
I will get more updates up as the week progresses!
1. We discussed Eli's lovenox. His levels are a drop over and the dosing is a real struggle. Right now it's coming in prefilled syringes made for adults. Eli clearly needs a much smaller dose. It's rough dosing accurately. He is going to work with the pharmacist to get it switched over to glass vials to draw ourselves. He is also going to continue weekly lovenox levels until we are at a safer dosing point.
2. Eli has been having a few mild nose bleeds but ANY bleeds with a kiddo on blood thinners is scary. We've had to restart one of Eli's meds for his sleep apnea, but it's a nose spray so this is obviously increasing nose bleed risk. His doc wants us to try some new drops to help keep his nose over moist.
3. We discussed the liver. The last rounds of lab work didn't look bad. Still elevated but not near as much. He is unsure if moving ahead with a liver biopsy at this point is a good idea. Being so new and still trying to get stabilized on blood thinners is a bit of a concern with a liver biopsy. We are going to start doing liver blood draws weekly instead of twice a month.
4. He has put a cap on how much blood can be drawn from the line weekly. Everyone has been gung ho to get all of their labs drawn, but Eli is paying the cost. His hemoglobin is dropping quickly and it's causing alot of energy issues for him.
5. We discussed Eli's central mixed sleep apnea. He is in agreement with the pulmonologist at this point. Eli will move forward with meeting with the ENT and most likely a plastic surgeon. Their thoughts are remove his tonsils and adnoids, dialate his nasal passages, place tubes in his ears and do his bronch all under one anesthesia. Everyone is in agreement that the sleep issue really needs dealt with next on the list.
6. He is leaving 1 dose of iron a day and will redraw labs in 3 weeks. Trying to see if we can find the balance of not overloading him with iron, but also keep his ferritin levels up.
7. We talked kidneys. He wants to get a firm plan in place before the end of the year as to what surgery and when and all that good stuff. This surgery has been a long time coming and I'm still no more ready now than I was when we found out about his kidney problems during my 18wk ultrasound.
8. Lastly we are going to be making some changes to Eli's hypoglycemia protocol. This will be our first change since Eli was diagnosed with his adrenal insufficiency and started his daily hydrocortisone. We are going to begin weaning off the cornstarch. If Eli struggles maintaining his sugars then we most likely switch his IV fluids from 1/2 NS to D5. We are going to wearn the cornstarch slowly so we are hoping that will help with no dramatic dumps.
They have put in all of his orders for the med changes, lab changes, and all of those things. We will get it all transitioned over in the next few days.
Eli is still struggling thru this cold and we are having to do a decent bit of rescue nebulizer treatments as well as a few extra cough assists. Luckily hydration hasn't been an issue.
The older 4 are doing well. The biggest 2 have been busy as ever fundraising for Eli's Energy for Life team. They are up to $264 on their own! They also put together a poster and fundraising project and presented it to their principal today. She is so excited about the fundraiser and awareness week. Each class will have a competition collecting coins (and bills) and the winning class wins a pizza party. They will also have awareness facts each day as well as a Wear Green for Mito awareness day. The kids are working on a poster to present to the class so they can better understand all of Eli's issues and equipment when they see him. We are so very proud of them and Eli is so blessed to have siblings who love him unconditionally!!
Today was my eye doc appt. My eyes are a mess. Which I was already knowing on my own. My doc has ordered some special contacts and glasses for me, as well as some new prescription drops. He warned that it's going to take my eyes awhile to try and adjust but he's hoping to be able to bring me some relief.
All the adults in the house are still sick with this darned cold as well. It just seems to hang on.
I will get more updates up as the week progresses!
Sunday, September 2, 2012
Sunday updates
We are home from the hospital, we got home last week.
Me, Bob, Ben, Lauren (Eli's primary nurse) and Eli are all sick with a cough and cold that just seems to want to hang on. So that pretty much atleast sums up the adults.
Emily ~ She's busy as heck. She's participating in choir 2 mornings a week, silver strings (the extra advanced violin for 6th graders) one morning a week, strings 2 afternoons a week, math club one afternoon a week, and private violin lessons 1 evening a week. This doesn't even cover all her basic classes and homework. She stays busy. She finally saved up enough money to purchase her own phone and now has an Iphone. She's loving it and we love not having her friends calling or texting us all the time.
Jace ~ He's doing service club once a month and math club one afternoon a week. He is looking at doing some gymnastics classes but hasn't fully decided. He's also in speech and is enjoying his new speech pathologist.
Benjamin ~ He's doing ok with school although he's having a few issues staying on task. We had an IEP check in last week and discussed some of the changes we were all thinking needed to be made. His IEP comes up the end of September so we will have a much more intense talk then. He's enjoying playing with friends after school and is also going to be starting gymnastics.
Ariana ~ She's loving kindergarten. She's getting in trouble almost every day though as she simply can't stop talking. Her teacher is learning the same struggles that we have. Nothing we have done has been able to break thru this hurdle with Ari. The good news is she is loving school.
Elias ~ Like I said he came home last week. We still aren't where we need to be on his Lovenox levels. Some of his labs are looking a bit better, some not. His red blood cells are dialated and they aren't 100% sure why. His protein is also still low even though we've greatly increased it. He's doing pretty good hydration wise, so that has been a definite blessing. We met with his geneticist last week and he went over some of his labs and thoughts and such. Next month Eli will begin some more genetic testing, that will hopefully get us some more answers. He also believes something is going on with Eli's liver and is working closely with Eli's GI doc on that. We also met with Eli's pulmonologist and sleep medicine doc this last week. He believes that Eli's adenoids are enlarged and thinks that's contributing to Eli's sleep apnea. He is sending us back to our ENT to have that evaluated. He wants Eli back on BiPAP but wants to get this issues fixed first. He put Eli on a nasal spray before bed each night to see if that helps some as well. Another sleep study is probably in our near future. Never fun. Lastly there has been alot of talks about Eli's ferritin, iron, and restless leg. Eli has been taken off 1 dose of his iron supplement to see if that helps his iron levels any. Eli's issue has always been that his iron levels are ok but his ferritin is very low. That's proving harder than expected to supplement. We are unsure if we will have to stop the other dose as well but for now they are taking it one at a time.
Lastly we learned that Eli has an Alpha 1-antitrypsin deficiency. Eli has the milder form "M" and "S" and his levels are barely under normal range, but with his history it's something that his doctors want to keep an eye on. Ultimately if his levels were to continue to drop it's something we could supplement thru his IV.
Right now we are simply trying to stabilize with all of the new changes, as well as simply getting over this sickness that so many of us have.
Mitochondrial Disease Awareness Week is right around the corner and we are gearing up for it as well! Our local mito walk is on the 15th and we are so excited to see everyone again this year! Our oldest 2 kids have been fundraising away and have raised almost $200 on their own! We are so very proud of them!!! Eli's Journey Energy for Life Team This link will take you to Eli's team page where you can join our team as an in person walker, a virtual walker, and/or make a donation to Eli's team!!
For Mito week I'm going to answer the question we are asked the most. How do we do it, how do we find enough time in the day. We are going to walk you thru a week in the life of our Mito family. We will record our days and nights, and of course will take fun pictures to go along with it all.
More updates soon!
Me, Bob, Ben, Lauren (Eli's primary nurse) and Eli are all sick with a cough and cold that just seems to want to hang on. So that pretty much atleast sums up the adults.
Emily ~ She's busy as heck. She's participating in choir 2 mornings a week, silver strings (the extra advanced violin for 6th graders) one morning a week, strings 2 afternoons a week, math club one afternoon a week, and private violin lessons 1 evening a week. This doesn't even cover all her basic classes and homework. She stays busy. She finally saved up enough money to purchase her own phone and now has an Iphone. She's loving it and we love not having her friends calling or texting us all the time.
Jace ~ He's doing service club once a month and math club one afternoon a week. He is looking at doing some gymnastics classes but hasn't fully decided. He's also in speech and is enjoying his new speech pathologist.
Benjamin ~ He's doing ok with school although he's having a few issues staying on task. We had an IEP check in last week and discussed some of the changes we were all thinking needed to be made. His IEP comes up the end of September so we will have a much more intense talk then. He's enjoying playing with friends after school and is also going to be starting gymnastics.
Ariana ~ She's loving kindergarten. She's getting in trouble almost every day though as she simply can't stop talking. Her teacher is learning the same struggles that we have. Nothing we have done has been able to break thru this hurdle with Ari. The good news is she is loving school.
Elias ~ Like I said he came home last week. We still aren't where we need to be on his Lovenox levels. Some of his labs are looking a bit better, some not. His red blood cells are dialated and they aren't 100% sure why. His protein is also still low even though we've greatly increased it. He's doing pretty good hydration wise, so that has been a definite blessing. We met with his geneticist last week and he went over some of his labs and thoughts and such. Next month Eli will begin some more genetic testing, that will hopefully get us some more answers. He also believes something is going on with Eli's liver and is working closely with Eli's GI doc on that. We also met with Eli's pulmonologist and sleep medicine doc this last week. He believes that Eli's adenoids are enlarged and thinks that's contributing to Eli's sleep apnea. He is sending us back to our ENT to have that evaluated. He wants Eli back on BiPAP but wants to get this issues fixed first. He put Eli on a nasal spray before bed each night to see if that helps some as well. Another sleep study is probably in our near future. Never fun. Lastly there has been alot of talks about Eli's ferritin, iron, and restless leg. Eli has been taken off 1 dose of his iron supplement to see if that helps his iron levels any. Eli's issue has always been that his iron levels are ok but his ferritin is very low. That's proving harder than expected to supplement. We are unsure if we will have to stop the other dose as well but for now they are taking it one at a time.
Lastly we learned that Eli has an Alpha 1-antitrypsin deficiency. Eli has the milder form "M" and "S" and his levels are barely under normal range, but with his history it's something that his doctors want to keep an eye on. Ultimately if his levels were to continue to drop it's something we could supplement thru his IV.
Right now we are simply trying to stabilize with all of the new changes, as well as simply getting over this sickness that so many of us have.
Mitochondrial Disease Awareness Week is right around the corner and we are gearing up for it as well! Our local mito walk is on the 15th and we are so excited to see everyone again this year! Our oldest 2 kids have been fundraising away and have raised almost $200 on their own! We are so very proud of them!!! Eli's Journey Energy for Life Team This link will take you to Eli's team page where you can join our team as an in person walker, a virtual walker, and/or make a donation to Eli's team!!
For Mito week I'm going to answer the question we are asked the most. How do we do it, how do we find enough time in the day. We are going to walk you thru a week in the life of our Mito family. We will record our days and nights, and of course will take fun pictures to go along with it all.
More updates soon!
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