Email Response #2

All-

I started this morning at 4:45 a.m., first answering emails to patients and their families.  I noticed a remarkable number of emails coming from Seattle, Washington; hence, I thought I would send a more lengthy reply to the Seattle Mito Family as a group.

First- thank you. Your vocal support and advocacy is great and well-needed, exactly what I would do. It is the squeaky wheel that gets the oil, and it was exactly that type of passion that resulted in Edison Pharmaceuticals being started as a patient- and physician-founded company. "We cannot and will not wait in line for a treatment– period!" I hear and applaud your message.

Second, on to your question as to the delay at Seattle. Simple truth is that we never expected EPI-743 to exhibit the promising results, albeit preliminary ones, that have been generated to date. We initiated a very closely watched and controlled treatment in one little girl ~ 2 years ago, and from that we are now at the request of FDA treating close to 85 children worldwide with a variety of inherited respiratory chain diseases. Dr. Enns - who is the principal investigator of this study - has presented some of the results at the UMDF meeting with our extended EPI-743 team. This data has just been tallied and submitted for publication.

Edison has been working very closely with the FDA, physicians, and hospital administrators and ethics review boards to expand access to EPI-743. There are three aspects that must be addressed to make this a success. We must have in place the appropriate safety guidelines set forth by the FDA and oversight at each institution; we must manufacture drug according to very strict specifications; and we must agree on budgets at each institution and contracts that are lengthy and unfortunately expensive.

As many of you know Edison is not a typical pharmaceutical company. Our mission is defined by our tag line--- "more tomorrows." We were founded by patient families who were/are blessed to have the financial resources to fund such an endeavor, and today we continue to only "invite" investors who share our singular focus… treatment for "our kids." In the last weeks, we have raised a considerable amount of money to fund studies in Seattle and worldwide, and we are working with FDA as recently as today is gaining their go-ahead to expedite treatment and pivotal clinical trials hopefully paving the way for a 1st approved drug for mito disease. We will not stop our mission there- we will work until we exhaust all of our talents and resources, and until all mito kids and adults have the potential for clinically meaningful treatment. 

We will not hide behind any excuses at Edison- too much is at stake. We know we can never move as fast as not only we want, but as you and your doctors and families want. The Seattle Children's group has been tremendous, but the fact is each institution has their polices and procedures, as so does Edison, and we both must respect them, and navigate them, and come to an agreement on all aspects of oversight, review and budget before we can begin treating patients.

As of today's discussion with administrators at Seattle Children's we have an agreed upon budget, and ALL roadblocks from Edison's side have been resolved. Next steps are for Seattle Children's hospital and Dr. Saneto's team to mobilize - then  a first subject can start. We are awaiting a response from Seattle Children's on their time estimates for this process. I have copied Lorraine Gilmore and will ask her to schedule a group conference call next Monday so I can field any open questions folks may have.

Thank you again for your advocacy and vocal championing of your children. We will need this and very much more to be successful. 

Best/g

Guy Miller, MD, PhD
Chairman, CEO
Edison Pharmaceuticals, Inc







**************

A great big THANKS to all who joined me in writing a letter.
I even got emails from people that don't have mito in their families, but felt compelled to help anyways. I appreciate each and every one of you who took the time to help us out in this matter. I guess we will see what happens here in Seattle....



********

Just got this from Childrens's after I forwarded Dr. Millers response....



Ohmygosh, Girl, I think you did it!!!!!  I mean, it’s not just “coincidence” that they decide this today after all the letters from here!
 
Russ is going to “mobilize his team”!!  Stay tuned!!
 




I did get a follow up email that Dr. S mobilizing his team will take a little time, but sounds like we definitely got things pushed ahead! Wahhhoooo!!!! This is such great news!

Email Response #1

I have to say...
I am impressed with the quick response, although it should be quickly addressed, so many times you sit and wait for a response.

Here we go...



Debbie

Dr. Miller here- I am the CEO of Edison. Thank you for your email below.
We have a call with the Seattle Children's hospital today to hopefully
finalize getting started.

We are 100% supportive of having EPI-743 available at Seattle Children's.
You can be certain of this. You need not in any way convince Edison or
myself of urgency or petition on behalf of your son or others. We were
founded by physicians and parents of children with mito disease with one
goal clinically meaningful treatment. While I will never second guess
what it is like to have a child with mito disease, I can tell you we are
heart felt in our mission.

Emails like this and others focus our attention even more and that is a
good thing. I will email you back after our call today and set
expectations on both the going forward process and time lines.

Thank you so much for taking the time to get in touch with us.

Best regards/g

Guy Miller, MD, PhD
Chairman, CEO
Edison Pharmaceuticals, Inc

My Washington and surrounding mito families ....

You've got homework....

We need to put the "heat" under Edison Pharmacueticala, to push forward EPI-743 so it is available at Seattle Children's Hospital TODAY!!!
Children's has done their part...there is so much frustration because it should be here and it is not.
I am asking you to write a letter to Guy Miller, and his assistant,Lorraine Gilmore.
gmiller@edisonpharma.com, LGilmore@edisonpharma.com

Any of my friends here, that personally know Hudson and our family, feel free to write as well....grandparents, aunts, uncles, any family members or friends, ANYONE who feels compelled to write, go for it!!!
Thanks!

Here. Is a copy of my letter:


Dear Mr. Miller,
Dear Ms. Gilmore,

I am writing in regards to my son Hudson, and the study EPI-743.
Hudson suffers from Mitochondrial disease, and is one of those individuals who it attacks almost every part of his body in catastrophic ways.

We have been waiting patiently, praying this study drug would become available at Seattle Children's Hospital, in hopes that Hudson would be able to participate.
We need hope. At this time, as you know, there is no cure for this catastrophic disease that so many children suffer from, EPI-743 gives hope. Hope for a change for the better in the lives of children who desperately need help with a disease that gives no hope.

I am not sure why it is still not available at Seattle Children's. What I do know, is time is running out for so many children, the clock is ticking and we need this to be an option NOW for our precious babies. I say "our" because I am connected to other Mito families here in Seattle, that are sitting, waiting patiently like myself. We wait, we wonder if this could be the drug that makes a difference in the quality of our child's life, we wonder how we could scrape enough money and find the time to put our lives on hold and fly our kids to another hospital, in another state to give our child this option.
For me it is impossible. I am single parenting three children, I can not scrape the money or put my life on hold....this needs to be available here, in Seattle, where Dr. Saneto knows Hudson personally and all his struggles and history with this disease.

I do not want to be one of those parents left to wonder if this drug would have helped my child.
Whatever the road block, whatever is causing this to be in a holding pattern and making it not available today at Seattle Children's, I am personally asking things to be feverishly pushed forward NOW. There is no time time to waste.
If you were to look in the eyes of my very sick Hudson, you would know he and all of his mito buddies here, are worth putting forth the extra effort to make this available.
I am a mom trying to do the very best for my son, please do what you can to help me do that.

Thanks for your time,

Debbie

Humbled

I am so humbled by so many who have crossed our path on this journey with Hudson.
Not everyone has been on the mito path...some started this journey with us as we unraveled why Hudson was having infantile spasms, without finding a structural, or tangible cause.
There are so many pieces of this journey that you can dissect and then actually relate to people with whom you have never met.

As we close out what has been labeled Mitochondrial Disease Awareness Week, I stumbled across my heart connected friend's blog tonight,with whom I have not physically met, but who gets me on so many levels.
I am teary eyed at her post...
Because, even though her son is not faced with this disease, she has been touched by my sons face, and the mighty weight of this disease and what it means to our family.
She has listened to my daily plea this week, to spread the word, and so she posted on her blog my sons face and the face of mito.

Thank you D....my heart thanks you, my mito baby boy thanks you....I am so humbled to be on this journey with you, even though are paths are so incredibly different....

Blessings to you my friend...thank you for not only hearing my plea but feeling it....




And so here is most of her post that I copy and pasted...to see it in full click on side bar of my blog list...happy being trevy.(because as an iPad post I am pretty limited)







for my Mito mom friend
 

Infantile Spasms is a diagnosis. 

 

 

And a marker.

 

 

Or symptom…if you will.

 

 

A symptom of something else.  Because once you enter Infantile Spasms Ville you quickly learn that seizures in and of themselves are not the final diagnosis…they are a symptom.  Of an underlying cause.  And in the world of Infantile Spasms there are many underlying causes.  Each underlying condition a spectrum.

 

 

Spectrum according to Dictionary.com:

 

  a broad range of varied but related ideas or objects, the individual features of which tend to overlap

 

 

You know.  The same but different. 

 

 

Each IS baby has a unique journey.  And those that share the same Underlying (spectrum) Condition do too.  Each Cortical Dysplasia child.  Or baby who had a neonatal stroke.  Or has Tuberous Sclerosis.  Or Dravets .  Or Mito…

 

 

(to name a few)

 

 

All have unique paths that unfold.

 

 

One thing that rings true for all (that I’m aware of) IS children and their specific underlying conditions…

 

 

There is NO cure

 

 

There are miracles here and there. Some children respond quickly to treatment and move forward without scars until Infantile Spasms is but a distant memory.  That maybe you had a nightmare once-d.  But the majority of families move forward into a journey that…while it brings it’s own sense of joy because our children do bring joy…is much different than the one we ever imagined they would travel.  Much harder.  Much darker.  Much more medically complex.  Drug and therapy saturated.  Tear and prayer drenched.  Than we could have imagined.

 

 

And we live each day trying desperately to love our children to the best holistic health humanly possible. 

 

 

And we spend our free time dreaming about the day there will be a Cure. 

 

 

This week is Mitochondrial Awareness Week. 

 

 

And while Trevy’s underlying condition is not Mito…

 

 

he does have a sweet little (arranged) friend on the other side of the country who does.  And his friend has an extraordinary mommy…to whom my heart has connected. 

 

 

And today…I’m praying and dreaming for Hudson. 

 

 



 

 

And this post is my way of helping create more awareness for all the children and their families courageously living with Mitochondrial Disease.  

 

 

XOXO Hudson & Mommy

 

 

…danielle























for my Mito mom friend
 

Infantile Spasms is a diagnosis. 

 

 

And a marker.

 

 

Or symptom…if you will.

 

 

A symptom of something else.  Because once you enter Infantile Spasms Ville you quickly learn that seizures in and of themselves are not the final diagnosis…they are a symptom.  Of an underlying cause.  And in the world of Infantile Spasms there are many underlying causes.  Each underlying condition a spectrum.

 

 

Spectrum according to Dictionary.com:

 

  a broad range of varied but related ideas or objects, the individual features of which tend to overlap

 

 

You know.  The same but different. 

 

 

Each IS baby has a unique journey.  And those that share the same Underlying (spectrum) Condition do too.  Each Cortical Dysplasia child.  Or baby who had a neonatal stroke.  Or has Tuberous Sclerosis.  Or Dravets .  Or Mito…

 

 

(to name a few)

 

 

All have unique paths that unfold.

 

 

One thing that rings true for all (that I’m aware of) IS children and their specific underlying conditions…

 

 

There is NO cure

 

 

There are miracles here and there. Some children respond quickly to treatment and move forward without scars until Infantile Spasms is but a distant memory.  That maybe you had a nightmare once-d.  But the majority of families move forward into a journey that…while it brings it’s own sense of joy because our children do bring joy…is much different than the one we ever imagined they would travel.  Much harder.  Much darker.  Much more medically complex.  Drug and therapy saturated.  Tear and prayer drenched.  Than we could have imagined.

 

 

And we live each day trying desperately to love our children to the best holistic health humanly possible. 

 

 

And we spend our free time dreaming about the day there will be a Cure. 

 

 

This week is Mitochondrial Awareness Week. 

 

 

And while Trevy’s underlying condition is not Mito…

 

 

he does have a sweet little (arranged) friend on the other side of the country who does.  And his friend has an extraordinary mommy…to whom my heart has connected. 

 

 

And today…I’m praying and dreaming for Hudson. 

 

 



 

 

And this post is my way of helping create more awareness for all the children and their families courageously living with Mitochondrial Disease.  

 

 

XOXO Hudson & Mommy

 

 

…danielle

Our Mito

Everybody's mito looks different.
Hudson's mito affects our entire family, it has changed our lives forever.

My post will reflect our mito in pictures...I really encourage you to read my sweet, dear friend, Heidi' s blog post

Jack and Hudson appear very different in the way this disease affects them. Our pain, our fears, hopes and dreams as moms, are all the same when it comes to our boys. If you want to read a moving and heart tugging post about the reality of this disease, I send you to her platform.


http://jackryan4.blogspot.com/2011/09/awareness-week-surviving-life-with-mito.html?showComment=1316799514998#c4651756399596778123



For us, this is our mito in pictures......

A sweet boy who fights to live on a daily basis

He doesn't have a drawer filled with toys, or markers....but a drawer filled with medicine syringes

There is no cure, so he takes a cocktail of vitamins plus several meds to reduce his seizures...they can't be stopped!

He eats nothing by mouth, he is g tube fed, so we keep a storage of bolus tubes and extensions so he can be fed.

Every month boxes of his "food" are shipped to our home. Amazingly he grows steadily only being fed medical formula through his g tube

A little boys room is to be filled with cars, toys, puzzles and games...Hudson's room looks more like a make shift hospital...all the above pictures are the supplies stored in his room. His suction machine, and a drawer of suction supplies. His pulse ox, and its supplies.

Hudson gets several hours of therapy a week. His muscles are weak and he bares no weight, which could lead to further problems we are trying to avoid

AFO's aid in his feet not getting disformed

Hudson has been hospitalized more times than I can count in his 4 short years.

Hudson sleeps a lot, because his battery is always on empty.

At the end of the day, I wish this wasn't my blog, I wish these weren't my pictures and pictures of my precious 4 year olds life....the reality is...I own this blog, and my baby is so sick I can barely wrap my brain around it because the pain cuts too deep. Our reality is an incurable disease that slaps us in the face daily.

Only by the grace of God, I do what I do to give the very best to my Hudson. Only by His grace, can I find joy in the pain....only by His grace, am I able to blog about the pain.
I pray God has a miracle in store for this mito world we share with so many.

The good n the bad

Today has been one of those days...
A day spent driving, a day spent at the hospital...2 appointments to tackle.

First...Hudson's echocardiogram. This was his first time. It took about 30ish min, and I sat and watched the screen as the doppler ran across his chest. I saw all kind of brilliant colors dancing about the screen, and all I could think of is what if this diseae is now weakening his heart...will he now have to add cardiologist to his list of doctors?

I was told to ask if the echo was read at my afternoon appointment with Hudson's Pulmonoligist. This is where the good news comes in...
As he is staring at his computer screen reading over the echo results, out of Dr. Pulmonarys mouth came words I rarely hear..."his heart looks perfectly healthy and normal." That was wonderful to hear...one less worry for now.
Sadly, I have learned to try and sorta brace myself or prepare for bad news and never expect to hear good news...it just is what Mito has done to my mind and heart.

The not so good...
Last night I noticed Hudon started coughing a lot. He got real bubbly at the mouth, lots of secretions, and started sounding more junky than normal. My gut...that ache inside me that says something is brewing, kicked in...today, he has sounded horrible and a ton of bubbling secretions, very lethargic. I told pulmonary doc something is brewing..even though his sats were 99 while there...I just felt Hudson is on the brink....sure enough, this evening he is running a fever. Thankfully this dr. listens to me and is proactive, so he gave a script for Augmentin. Just hoping this is not the same strain as our last illness that landed Huds in the ICU....that did not respond to Augmentin. He also had labs drawn today for his gases, and he called me this evening to tell me they looked good...that was surprising to me with him being sick I expected his gases to be off...see, always bracing for the worst.

On top of it...
I am not feeling well...Im coming down with something...I thought it was allergies, but now I am wondering if it is a cold...I think allergies was wishful thinking.

Mito Awareness....

I really wish I could dedicate more time and energy raising awareness and money to support finding a cure for so many suffering at the hands of this awful disease.
Today...it's just not in my cards to have that title of "advocate" behind my name. I know how much time and dedication it takes, and I so admire those who do all they can to raise money and awareness...if you are one who conducts fundraisers, walks, etc. I thank you from the bottom of my heart...
Being this week is awareness week in the mito arena, I am trying to spread awareness on my face book page. So many people have no idea about this disease, and if I open some eyes to the reality of this devastating disease, well I guess I have done something, a small something.

The one thing I really despise about this disease, is that it affects so many functions of a persons body. It is hard enough to deal with epileptic seizures. I can't imagine if seizures were the only symptom Hudson and I had to deal with....that is horrific in itself, and 1 devestating illness.
But there is then his muscles that are affected. If you touch Hudson he has no shoulders, they are so small and in general he is mushy.
So there you have brain and muscles, which is a lot....but there's more....
His little tummy can't process food...he has reflux, vomiting, and then back to his muscles....his neck and throat muscles are so weak, he can't swallow safely and therefore has to be g tube fed. So now we deal with brain, tummy, muscles....but wait....there's more...

Hudson's respiratory system is compromised. He has to sleep with cpap now at night because he averages 20 apnea/hypopnia episodes an hour.

And because this disease can affect the heart muscle....tomorrow Hudson will be going in for his first echocardiogram.

There are still many other areas in the body this disease can attack....did you know Mitochondrial Disease is progressive?????

Did you know this is not a rare disease, it is just not well known which is why awareness and spreading the word is so vital...
Did you know there are many adults that have it too? There are many who have it, suffer, and don't know they have mito.
Did you know they believe so many other diseases likely stem from the mitochondria dysfunctioning? Disease such as cancer, Parkinson's,autism, and many more. Do you know, like so many disease, no 2 cases of mito appears the same? It is crazy how different the faces of mitochondrial disease are!

We NEED a cure....for Hudson, for all of Hudson's mito friends, for all those who have already lost their battle...we need a CURE!!!!!

My full time life

Wow...it has been a full week!

This week we pretty much got everything going in full swing....

First full week (week#3)back at school for the kids...I can't believe the amount of homework already. It's what I expected, but Hailey being in 2nd grade....HUGE jump in the load from first grade. I remember it all from when Hunter was there...it is just having 2 kids with full time homework and single parenting + all things Hudson...it's a lot for one person...but that's just the beginning...
This week I went back to work...which is nice because I miss that money, and the kids are pretty sweet too...I think of my job more as a opportunity to minister to children and their moms...I get to talk about Jesus, pray with them, and also give moms a few hours to themselves while they know their babies are in loving hands...a blessing for all!

I started back at community group this week with my church. I did community group after I had just had Hudson, and 4 months later when all hell broke loose, our attendance was impossible. After the realization of our new normal had settled,I did a friends churches bible study, and home based.
Over the summer, I had really felt that nudge to contact a dear friend whoose husband runs community group from 4 years ago. She met me for lunch and I laid my heart out to her...she knows much of the last four years and she is a strong Christian woman who I felt could give me solid counsel. I knew God was orchestrating this needed meeting, and I knew I was being called...I need to be around others who can be real...with their faith, life's struggles...who are willing to call me out on my sin and help me deepen my faith and walk together through life. Thursday night was my first night back...it was like being home. I went alone, knew my friend and her husband and no one else....it was a whole new group, but they were so welcoming. We ate dinner together and then spent time going through questions regarding the sermon, real life stuff....lots of emotions, lots of honesty, people coming forward with their sinful nature....people who ultimately love and desire Jesus. Great stuff for me right now. I walked away knowing this is where I need to be...in community.

Hunter is now back at Scouts (anyone want to buy popcorn?) yep...fundraisers are in full swing as well as a upcoming family campout.
Hunter started guitar lessons this week as well. He has been wanting lessons since he got his guitar for Christmas and is super excited to learn how to play...my mom got him lessons for his birthday.
On a whim, Hailey decided she wanted to play the violin...I just so happened to be talking to her music teacher before school about Haileys desire and she had told me the next day she was starting group lessons! What are the chances? With small ears overhearing this she begged me...how could I say no? Especially after I received the following email from her teachers this week;



Mrs. Austin,
This is just a quick note to let you know how much Mrs. Tarr and I have enjoyed having Hailey in class thus far. We love her sweet spirit and willingness to help others. Hailey seems to have a deep understanding of caring for others. This characteristic is beautiful to see.
 
Hailey is also very diligent about finishing her school work. Her work is completely on time and done so neatly. Mrs. Tarr and I also appreciate this so much.
 
Thank you for your effort and willingness to help in the classroom.
 



So I felt she deserves this violin opportunity! I am very proud of her and who she is.

So....yes, I almost forgot...this week I also started my weekly volunteering in the kids classrooms.

Then there is my sweetie pie Hudson.
This week we have implemented our new schedules for vision therapy, speech therapy, p.t., o.t., and pre- school teacher. Each of them taking about an hour once a week in our home.
Not to mention the P.T. Clinc I take him to weekly as well.

On top of all this, I have managed to get my behind up to the YMCA daily since the kids have been back in school. It has worked really well so far with their daycare...the time of day I get their it is usually pretty empty, and they usually read Hudson books if he is awake. Most of the workers are aware of Hudson and our situation, so I appreciate not having to tell about him over and over again.
I have definitely had to " let go" of doing daily housework with my new schedule. I hate how behind I feel in this department, but I feel going to the gym is a priority.
I need something for me!
Saturdays are filled at the Y....Hunter has wall climbing and swimming with a buddy, and Hailey has swimming, sports class, and Tae Kwon Do...mom works out! :)
Sunday of course....church, and making time for friends and family, and then get ready to start the week all over again!

So...with my last post I whined about lack of sleep, and how we were implementing a new med for sleep. It has helped. It doesn't knock him out, but once he falls asleep he sleeps. He is also not as agitated with the mask. I emailed his pulmonary doc, and told him all the stuff that's been going on. He emailed me right away...he fit me in next week and we will weigh the pros and cons, and I will bring the mask to our appointment.

I am grateful I have been sleeping more...I don't think I could keep up with this crazy life of mine on no sleep!
 

A sleepy day for Hudson... Asleep listening to The Hungry Caterpillar being read to him on my iPad!
( thanks D for the heads up on the free app)

Another one of Hudson's "sleepy days" when has he ever slept in a stander!?!

September 11, 2001

I thought this was a great article (below)in the Washington Post, in light of the upcoming anniversary of 9/11/01.
It just so happens to be written by Pastor Mark Driscoll,of Mars Hill Church here in Seartle where I call my church home.
It is such a haunting memory and so tragic...unreal it has been 10 years.
Please read the article if you felt lead to do so.

On a Hudson note...
I have slept 2 nights in a row. Tonight will be the true test as he slept a lot today, and hasn't gone past 2 days of sleeping through the night in a month.

Will he do it???? Praying it's a big fat YES....we shall see! :)








The horror of death and the hope of resurrection

Horrific doesn’t begin to describe 9/11. Like most of the world, I spent that day glued to the TV in disbelief, watching the footage of the planes hitting the towers, causing those gigantic fireballs, melting the iron beams, and triggering the eventual collapse of the once stalwart buildings.
I watched stunned as people jumped hundreds of stories to their death. Others stood out windows, trapped, begging desperately for saving. It was a dark day, and a surreal one. All captured on television for the world to see.
It’s been a decade since those horrible attacks. In looking back, it’s appropriate to reflect and ask, “Why is 9/11 seared into our brains? Why is it such a cultural force? What does the day tell us about ourselves and God?”
9/11 reminds us that life is fragile and that ultimately we’ll all die. Amid the troubles and worries of everyday life, we often ignore this fact. But times of great tragedy serve to remind us that life is both temporal and fragile. Death comes for us all.
And in those moments, we wonder, what will happen when we die?
People have opinions. Some believe in reincarnation. Others believe that nothing happens. Still others believe that there’s some sort of afterlife that you go to if you’re good. For the Christian, we believe that there is an eventual bodily resurrection of the dead.
The question becomes, “What and who will you trust to teach about what’s next?”
Christianity is unique in that it provides for the hope of resurrection and eternal life for the body. Often, the cultural concept of life after death is an inane, cartoonish picture of people becoming chubby angels, wearing diapers, and plucking harps while sitting on clouds with wings far too small to take us anywhere interesting. The biblical concept of resurrection, however, is this world recycled, renewed, and redeemed without sin and the effects of sin, such as death, injustice, evil, hatred, pollution, and suffering-the world as God originally made it. And, the world as God will remake it in his time.
According to the hope-filled vision of the Bible, life after death culminates in a resurrection of the physical body-not just the ongoing existence of the immaterial soul in some other realm. And our bodies are made new, without frailty or mortality, “So is it with the resurrection of the dead. What is sown is perishable; what is raised is imperishable” (1 Corinthians 15:42).
This is in stark contrast to most of the historical ideas about life after death, which view the body as a prison and the soul as immortal. Plato drives this point home: “The soul, being immortal, existed before the body, and will continue to exist after the body is gone.”
Since 9/11, there’s been a great resurgence in spirituality. I often meet people who are self-described as “spiritual.” 9/11 has caused many to seek some sort of meaning and grounding in the face of death.
Yet, the question persists, who will you trust to teach you about life after death in general, and guide you through your own death in particular? Jesus alone has died and returned from death. Jesus alone knows what awaits us on the other side of death. Jesus alone has defeated death, and declared so saying, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall live, and everyone who lives and believes in me shall never die” (John 11:25-26).
The central event of the Bible and human history is the death of Jesus on the cross for the sins of the world and his resurrection in victory over death. It is through sin that death entered the world. And it is through Jesus’ death that sin and death are defeated, those who are far from God are brought near to God, and those facing death can do so knowing that Jesus tells the truth, that he meets us on the other side of death and that he raises the dead.
Do you know Jesus as God, forgiver of sin, and conqueror of death? The only thing worse than dying, is dying apart from Jesus, who said, “I am the way, the truth, and the life. No one comes to the Father except through me” (John 14:6). People so opposed this claim by Jesus that they killed him. Thankfully, he resurrected from death to verify his claim.
Sin is the problem. Death is the consequence. Jesus is the answer.

I am loosing my mind!!!!!!!!

*UPDATE RE. POST BELOW*

No person this sleep deprived should have to jump hoops like I have to get a stinking med!
I have talked to Pam at least 5 times, the pharmacy 3 times, and my insurance company. Bottom line, there was a 48 hour authorization because this med is not given to children under 7.
Thanks to Pam and Dr. S and my many phone calls it is done...almost...I have to pick it up tonight!

We are going to try Risperidone. Anyone out there use this for sleep? Were starting off at a very low dose, because it can cause vomiting (NOOOOO!)and as I was told, " it is not a simple drug" so....1/4ml for 4 days, then 1/2 ml...goodness I hope this works!










I am looking for Hudson, has anyone seen him?????

What happened to my Hudson? The little boy who sleeps at night, rarely keeping his mom awake? I am going insane with this new Hudson....this Hudson that is in a pattern for a month now of staying awake ALL night and sleeping ALL day....

Last night was one of those nights. He slept the night before, so he woke yesterday at 12 noon. He was up all day and I was hopeful he would sleep another solid night. By 9:30 I fed and gave him his meds....at 11 he was still awake, but quiet in my bed. I was exhausted so I put him I his crib. Put his cpap on and was hoping he'd sleep. An hour later I heard screaming. Not a cry scream, just an anwry, trying to be vocal scream. I took his mask off and figured I'd let him fall asleep without it, then put it on later if I was awake. Needless to say he was awake "screaming" until 5 a.m.!!! It is like he is in this weird zone and it takes sunrise before he snaps out of it! Ugh! Unfortunately this has been a pattern for a while now. When the kids were still on break, it was somewhat bare able because I could stay in bed, but now that they are back in school....I am dying. I am sure my fuse is short...I am sure this is not good for me, a month of this crazy sleep pattern. During the day, he is comatized....seriously....I take him out and he sleeps through it all! Saturday we went to a blackberry festival...loud music, hundreds of people, hot day....slept through it all! I think onlookers thought we were abusing him...the kids were slapping his cheeks, I am scratching the bottom of his feet...we even tried cold water...nothing!!!

He seems to do about 2 days in a row of no sleep at night/sleep all day, then 1 night sleep through the night (or he is up and at that point I have died in my sleep and no longer hear him!! Ok a little dramatic, but that's how it feels!)

It is so hard single parenting Hudson at times...for 4 years I have taken it ALL on. I gladly take it all on...I don't know it any other way, but I imagine sharing it with a spouse who also gladly endures and shares these times would be a huge help,and keep the sanity in check.
I have no one to do " shifts" ....there is no one to share the responsibility or the craziness having a sick child brings. It is all on my shoulders, and although I adore him, it is exhausting, stressful, and sometimes feels like too much for one person to bare. I find myself reminding myself of those who have lost their child to this disease, they probably wish they would hear the sound of their little ones voice keeping them up all night...so I then feel ashamed and grateful all at once. I try to keep thing in perspective, sometimes it is hard to do on little sleep. I have to keep up with the demands of not only Hudson, but my other 2... Now school and homework (yes, they already have homework!)
Sometimes the best medicine for me is a good cry...at 3 a.m. this morning, as I lye in bed, after getting up for the umpteenth time, I just shed some tears, praying out loud in frustration and exhaustion.

I guess to those who read my blog and also have a sick child, I want you to walk away with this....if you have a spouse that shares the burden as well as the joys of parenting a s.n. child, be thankful. A tiny part of me envies you, but I am mostly grateful you don't have to take it all on by yourself. Loosing your mind all by yourself....not fun!! Trust me.

So....as I type, Mr. H man is snoozing away. First thing after dropping kids to school was a call to mito nurse. She returned my call right away laughing...In my message I told her I was ready for some "heavy duty medication" forget the melatonin, we need the " big guns" now!
She knows how anti-med I am...I am always looking to wean Hudson off of one of his bazillion drugs he is on, and now here I am begging for something to knock him out!!!

I am waiting for her call...she is talking to Dr. S. about which "gun" we will use.

A video

Hudson has been twitching a lot the last 2 days, so I was trying to catch it for our upcoming neurology appointment. What I got instead was a spasms. A mild single spasm....hate them...the tonic ones are much more intense, but he occasionally has these as well. I didn't know *infantile* spasms would continue at age 4.
I also wanted to note his hands...notice how spotty and purple they are...his feet get this way too, and they are always cold when like this. :(
Wish it was a " happy" video to share...something he is doing, other than having seizures.

Choking back the tears

Wednesday was one of those days...

Circumstances that evoke the welling of tears, that I seem to, for the most part, choke down.

Wednesday was Hunter and Hailey 's first day of school.
They were so incredibly ready to go back to school...in fact they were up all through the night and early, really early in the morning, all ready to throw their good old uniform on and head out the door. Now, tradition in our home, like many, is pictures taken at home outside before school and pictures taken at their desk in the classroom. I also like to gel Hunters hair a little and Hailey 's hair-doo is pretty much always mine daily, so she is used to that...although she has her requests and opinions!
Hailey was very cooperative....Hunter on the other hand was.....hesitant.
First thing he asked me that morning was....the hair...." do you have to gel it mom?"
After much coaxing and convincing him if he didn't like my gel job, he could change it, he allowed me to go at it. The end response was " I look gooood!" Lol
Pictures at the house...no problem...willing participants.

We took Hailey in her class first. She gladly took pictures inside the classroom.
Once she was settled, Hunters turn. The bell had just rung...most of the kids were seated, I and one other mom were walking in the class. I whipped out my camera, and Hunter instantly told me "no pictures mom " .....muttered under his breath. I snapped away...he was a tiny bit mortified, sorta. Not sure if it was the pics, or the kiss on the cheek I planted on him before I took off. (later that day he told me it was ok, the other moms did the same thing)
This has never been an issue...ever! Sadly, I know....he is growing up. My yearly back to school traditions just aren't "so cool" anymore...is it so bad I want to preserve these memories? I know he will be happy 20 years from now to have these...but how do I convince him that today? He is my baby...I hate that he's putting the breaks on these things :( makes this mom sad.
Like I said, I took some great pics. Unfortunately, I can't upload them because my home computer is pretty much fried. So, I will share a few mobile pics...

With the new school year beginning, I decided I was going to start getting up to the YMCA with Hudson. I am so tired of having to depend on someone in order to get 1 hour to myself at the gym. I am so tired of worrying what others think if he is parked next to me...just figured I'd have the " I don't care" attitude and do it for me! So that's exactly what I did. Hudson was awake but sleepy and very chill. Found my machine and parked him. Started my workout... 5 minutes into it, a Y worker comes up to me and informs me that strollers/children are no longer allowed on the cardio floor. I could feel my voice crackle as I told her he can't be in the nursery...that he is disabled and has seizures. I told her if he couldnt be with me than I would have to cancel my membership because I have no other way to be there on a regular basis. She left me working out and said she would speak to her supervisor. I felt shakey, and upset, but kept with my workout. She kept circling the floor throughout my workout. I wondered if she was watching Hudson..his behavior...or just allowing me to work out with him out of pity.
When I finished, she walked up to me...right away I asked her if that would be my last time able to have him next to me. She explained out of safety due to weights and the machines, it was a new policy. She said they would love to have Hudson in the nursery in spite of his disabilities...his seizures...she introduced me to the supervisor and said they could keep him in his chair in the baby area, where they are too small to touch Hudson, and really aren't mobile. My voice quivered as I explained that " day care" environment is something I avoid at all costs. I was teary eyed as she explained I deserve to work out, and Hudson will be well taken care of with individual care as long as he is there. They will provide a walkie talkie so they could instantly reach me if need be. I felt humbled by the " help" and sad as I watched all the little ones, younger than Hudson, running around playing. So often I think I am over it, in those circumstances of seeing healthy toddlers running and playing, and then something like this happens...I get flushed, nervous, sad....I found myself not really looking at all the kids... It's a mix of emotions only a s.n. Mom could know. Their is still that ache, in spite of acceptance, wanting Hudson to be free of this disease and be healthy and "normal."

They gave me a discount on the cost of childcare as well, which was nice. By the end of the whole process I could feel the tears well up, and one or two dropped on my cheek. I was embarrassed that I was feeling so emotional about the whole situation. In the end I decided I would let Hudson reside their for my well being of a 1 hour-ish workout.
Am I being selfish?
Should I feel the guilt?
He's like a limb...I go nowhere without him...I do nothing without him...he is only cared for by my mom outside of me.

I think a huge part of my emotional choke back, was due to the fact that the "typical world" was willing to accept him just like all children are accepted. That is a rareity in my world. So it's this weird feeling of uncertainy leaving him in that environment, mixed with a feeling of gratitude that they are willing to accept him so I can do something for me...any day...at any time ....that works for me!
I really took it for granted p.h. (pre-Hudson) running into the gym and dumping the kids...I didn't realize what a luxury it was to not have to think twice about going to work out and what I would do with the kids....Hudson has, like so many things in my life, opened my eyes wide to what so many take for granted. Such simple things...but for a mom like me, simple has become complicated, exhausting, non-existent. Nothing is "simple" anymore....but I guess in return, I am learning some life lessons that so many never will...Hudson is a great teacher.

I will confess....
today I did not take Hudson. I dropped him with my mom. She offered...and I will avoid the environment of Hudson + kids if I can. Besides....it was sooooo nice to get out of my car and simply walk in the gym...walk up the stairs and not take the elevator...
right to my machine...it was so easy, so very simple.