Buying some time...

After calling the mito nurse yesterday, and discussing Hudson's state of being, we decided I needed to reschedule his MRI/MRS.
The bottom line is Hudson is really, really loaded with excessive mucous coming from both his mouth and nose.....STILL....almost 2 weeks later!!!!! Typical for Hudson :(

He has a good cough, but unless I'm right there with the suction machine to catch it when he coughs,he ends up swallowing it which possibly/likely he aspirates and then he still sound gurgly, coarse and works harder to breathe.
Our appointment was set for the 27th at 7:30a.m. Being we live a good 45 minutes from the hospital, and all it entails to get there timely, if he is having these respiratory issues we would likely be sent home as they can't put him under anesthesia like this.

Unfortunately Dr. S and the research study nurse are unavailable, so Pam and I had to make this decision. I do remember the research nurse telling me the MRI was fine to be done after the screening for Epi-743, which is on the 30th. So I tried to get the first week of January... because Dr. S has a specific machine that has to be used, the 9th was the earliest. I'm thinking it should be fine on our timeline (hoping)
Because I never got any date as to when we would start Epi-743 after the screening was complete.

(Clarissa... Do you have a start date?)

So.....time is our friend with mr. gunky boy. Thankfully...no fever, no tummy problems, he's sleeping and wakeful...no unusual behavior...
His little body just can't fight a cold like it should. I'm pretty sure he got this from me....the beginning of Dec. I was pretty sick... horrible cough that hurt my chest followed by lots of mucous... It took me 2 weeks to feel myself again. For Hudson I'm sure I will have to double that number.... Poor kiddo, as if he doesn't go through enough without being sick.

2weeks ago, when Hudson came down with this, we had our appointment and holiday tradition of seeing Santa at Nordstroms in Seattle, walk around, go to dinner. Hudson was running a fever that day and so I left him with my mom and decided to uphold tradition with the other 2. It was so hard on my heart to not have him with us but I knew I had to do what was best for him and consider my other two.
I vowed once he was better I'd take all 3 to get all 3 H's with Santa. Obviously the clock is ticking with Christmas days away.... So this week...

I got all 3 in their Christmas outfits..check!
Hair done....check!
Towel for secretions...check!
Suction machine....check!

And off we went for round two of Santa Clause. I went to our local Nordstrom, which does not have the special accommodations like downtown Seattle. (the Seattle set up is waaay nicer!) thankfully there was no line until after we got our pics and Santa was willing to see our special family....
And I got my picture. Might sound corny but I was teary eyed after it was all said and done...Hunter even noticed and mentioned how emotional I was...

I guess my reality is this...
I don't know how many Christmas's Hudson will have... I don't want a Christmas to go by that all three are not together for our traditions... I want Hunter and Hailey to have the memories of holidays with their baby brother...I need him... and I refuse to let this disease rob us of these memories.

So this year we will have 2 santa pics for 2011....
and I'm sure we will remember this was the year Hudson was sick but not too sick to let it stop tradition and one determined mom

A few more....

Twas the week after Christmas....(and some dear friends)

and all through the house not a creature was stirring not even a mouse...
Why, you may ask?
(I will spare you... my rhyme stops here :)

Because we will all be at Seattle Children's preparing for the start of a new year, new hopes....

Dates are set and I need some serious prayer.
Dr. S wants Hudson to have an MRI/MRS as part of the screening process for Epi-743. His appointment is set for December 27, at 7:30 a.m. He will be under anesthesia, so I need prayer re. that. Hudson has always come out of anesthesia pretty easy, but it still makes me nervous.
His actual day of screening and signing consents to start the trial will be on December 30, at 12 p.m.
This will include a physical exam,electrocardiogram,chest Xray and blood work.
Hudson MUST be at his baseline for both these dates. If not, he won't be able to go under for the MRI, and we need normal results with these labs and chest Xray in order to qualify.
Normally I wouldn't be too worried
BUT....

Hudson is sick.

He started running a fever Saturday.
We are back to "super gunky, snotty boy" slime all over his neck, pillow, face...I was up half the night suctioning and wiping away the goop.
God nudged me...I got him into the pediatrician yesterday and told him what we have upcoming. Hudson started Augmentin last night and has a 20 day rx. So this will get him covered through the end of the month and screenings.
So many prayer requests I know...
but here it is in the short of what you can be praying for.....

* This junk Hudson is battling clears up with antibiotics

* Hudson is at baseline before his MRI date...

*MRI and sedation go smoothly ... Praying no major changes with his brain indicating progression of disease.

* All screening tests look normal and Hudson qualifies for start date in January

* Hunter and Hailey....a lot will be consuming me with Hudson... I need patience and grace, so they don't feel pushed to the side, or less important.

* Results....would love to see positive results for my little buddy with the start of this.




As I write this blog post, so many of our mito kids/families are suffering.

I have stopped blogging throughout this post,several times, to hear other prayer requests of our mito friends...So many are suffering this morning.
I sit here and saturate each one of them in prayer, tears stream as I pray for these mightiest little soldiers of God, fighting a battle that is so unfair... And their amazing parents... The strength and courage as they prepare for what's next, with a pit in their stomachs....

Tricia's boy Calvin... They need answers as they see Dr S today... Increased seizures, regression since surgery, vision problems, labs, unexplainable pain

Jessica's little boy Brent who is so complicated and so sick, and all the bad news they have been receiving this morning as well as her other children being sick too. It is unimaginable!

Heidi and her darling boy Jack... As they head today to yet another appointment at Children's for GI issues.

Krissy and her fighter Talon...
They have been hospitalized for months, and this little boy is such a fighter.... Seizures, breathing issues, coma... although he has improved they made the difficult decision to have a trach placed.....now they begin yet a new normal and learn yet another way they must care for their son.

Jennifer and her little princess Katelyn....who suffers so similarly from Mito like Hudson.

I wish I could link all these families for more info, but I am restricted on my iPad, and am not capable.
The link below is a short video about Katelyn and her Mito.... Our doctor, Dr. Saneto is in it as well. It is near and dear to my heart as I got to meet this family this summer at the guilds mito picnic. Katelyn presents similar to Hudson... Every time I watch this I cry.
This family is so amazing and I so admire there strength together.

So PLEASE, copy and paste this link in your browser... You will see what I mean.



http://www.youtube.com/embed/Xe2VoxodGws

The glory of defeat

I have been on such a whirlwind of emotions over the last week...the first half I felt utterly defeated by several situations...
Which made me feel as if I was swept off my feet (not in a good way)pulling the ground up from under me.

Having Hudson, requires a lot of fight...
I have to be his voice, his strength, his advocate...I am happy to take it all on and more... Because he deserves the very, very best.

For the past several months I have been taking the steps to get the state to look at Hudson, not at our assets, or income... But to look at my son...

My son, who is terminally ill, who requires 24 hour care, who is completely dependent, and helpless.

With love and gratitude, I care for Hudson... Alone... single parenting a catastrophically ill child and 2 other very healthy children, who have the more typical needs and demands...it's a full time jobx3.
But as those who care for their own "Hudson" knows, no amount of money can afford all the needs required to give them all they need.
This is why there is something called a waiver... There are several levels on a waiver... My prayer was once Ms.DDD representative came out and saw Hudson, saw his needs, heard about his epilepsy and mitochondrial disease, heard about why and how I single parent all 3 kids... well...that it would be a no-brainer... and I had hoped when Ms. DDD had tears well up in her eyes as I explained this life I lead...I could see she was not just a state rep, but a mom herself showing me a bit of humanity, and compassion.
So imagine how I felt on Tuesday when I opened the letter, a letter that I have been looking for daily to be in my mailbox since our evaluation, and at the top I read "DENIAL OF WAIVER"

Couldn't believe my eyes... How could Hudson be denied? All I was really in hopes for, was supplemental insurance and respite care. Ms. DDD even asked me in our eval. how many hours a week of respite did I need. Feeling appreciative if I got respite, I had told her I would be grateful for whatever the state would give me.... I have had no help in 4 years and anything would be appreciated.

After reading further, it appears the denial was not based off of Hudson but the fact that the state is not accepting new waivers and funding is lacking...of course!!! So we are put in a database...probably forever will we sit in a database.

I think what I despise the most is how the "system" works in general ......
Your a hard working family, trying to do the very best for your kids... Providing a safe, loving home, holding jobs, paying bills.... DENIED any help, almost feeling like a punishment, for being a functional, responsible member of society.
On the flip side I can think of many scenarios... an addict in recovery, can't keep a job,lazy,don't own a thing, crooks who know how to"work" the system, and voila...the government steps in and provides...
Of course I am generalizing...some states are better than others with providing to families like mine... WA happens to be one of the worst!
Just my luck.

Feeling bad, but didn't know what was to come on Wednesday of last week.
I had no idea I would be overwhelmed with sadness beyond belief.
You see, I decided to make a phone call to our neuro's nurse. I haven't touched base with them in some time and I was curious to find out where they were with the Epi-743 timeline.

After giving the Hudson update, I asked if there was any new news. As a matter of fact there was... they had enrolled a patient into the study, their first one! So many questions whirled through my head.... When did they start this? Why wasn't I contacted? When do WE start?
I wasn't ready to hear the fine details the way they were to play out... I didn't know I would need to brace myself for bad news in such good news. The study drug is now available at Seattle Children's BUT they will only be allowed to enroll 5 patients.
That's right...FIVE... and there are over 100 mito patients under Dr. S.

I had assumed this whole time that I have been pursuing this, that once Epi-743 called Seattle Children's home.... Hudson would be in.
I now knew with only 5 patients having this opportunity our chances were now much slimmer.
I mentioned going to Stanford if we would not get in, but wasn't given much encouragement...I was also reminded of the fact that 2 children that were sent there had passed away while on this study....
I got off the phone and just cried.
I cried most of the day, with the exception of being at work.
The moment I got home...and saw my Hudson lying on the couch, I literally fell to my knees sobbing...praying...sobbing...
I felt utterly defeated in that moment.
What I now realize, which I didn't so much then, was the glory in that moment... Being defeated....feeling lost and helpless...relinquishing the fight...in that moment the only (and greatest) thing I did was falling to my knees, praying, giving it to God...who knows my heart, and knows how all of this would work out. I realize now, God can take our pain and suffering and turn it into victories... It may not happen instantly or the way we envision, but feeling defeated made me ultimately surrender to Him, and trust in His provision.

That night I journaled my feelings... Here is a portion...

"Today has been such a difficult day for me...
After hearing there were only to be 5 children allowed on Epi-743, I had a pit in my stomach.
I have been crying a lot today.
I realize this is not a cure by any means. I realize each child will react differently and there is know way of knowing who will benefit most from this drug. I realize this must be grueling for Dr. S to have the say as to who,out of all his patients, gets to fill 5 slots.
I realize this drug may or may not change the quality of Hudson's life.

What I also know is....that Hudson is so severely impacted by mito. His quality of life is no life at all, every day is a struggle to live. My 4 year old is an infant and is stuck in a body that doesn't work for him. It is absolutely devastating ....and I know Dr.S sees this daily in clinic, as he treats his patients.

Today I was literally on my knees praying over Hudson....praying he would have a chance, praying he might fill one of the 4 spots left, praying and pleading to God to hear and answer my prayer, praying God would lead Dr. S to call on Hudson to have a chance.

If begging would help I would...I would do anything to give Hudson a chance to have something help him, because so far....NOTHING has worked.
I am Hudson's voice, and as that voice I can only advocate and fight for him."









The next day I was still sad but a little better. I realized there was nothing I could do to make Hudson be included as one of the 5...I knew God was there, in my grief.

Plugging through my day with a heavy heart, I got an email from a sweet friend of ours... announcing they got "the call" I was happy for them... I would rather know and be able to follow someone on trial than know nothing at all... I also in the back of my mind couldn't help but think "only 3 spots left"
Minutes after getting my friends email, I got another as I was walking in the house from a busy day...
It was from the research coordinator at children's. I skimmed through the email... She was following up on a call she had made...I looked at my phone and it said "New Voice Mail"....
Shaking, I picked the phone up to listen to the message...
Tears start streaming from my eyes...uncontrollable tears... Hunter and Hailey are staring at me as I stand in disbelief... Phone to my ear....sobbing...

Hudson was chosen to be on the Epi-743... She was emailing the consent, and I was to let her know if I was interested.

Unbelievable....pinch me... Is this real?....
JOY!!!

I have absolutely NO hesitation in participating. We have nothing to loose and everything to gain...
Sign Hudson up!!!!!

I will say, I have had guilty feelings once we were to be included...almost like "survivors guilt" because I know many families that would love this opportunity, and knowing how it felt just the day before... I just feel and know that pain... It is raw and unsettling. All I know and pray for, is that besides Hudsons personal benefit, others may benefit down the road as he is a "ginny pig" as need be for this to have the possibility of being marketed as the first treatment ever for mito.

I know too, from the research coordinator, that they will keep requesting to admit more than 5.

This week I talked to the study coordinator live and got some detailed info on what is to come.
Quick summary...
It is a 12-14 week "emergency" trial (this is not considered a clinical trial)
At the end of December he will go through the screening process... Tests, blood work, etc.
He will have to be off his "mito cocktail" but will remain on his anti epileptic meds.
Come January, we start the drug.
We will come in once a week to have labs drawn,etc.

I will end by saying....

Last Thursday was a wonderful night...I cried alot, but thankfully tears of great joy.
My mom got a small cake, a good bottle of wine, and we had a mini celebration with all 3 H's.

Earlier that day, before the incredible news, I thought about Christmas and Hudson...(more sadness)
That night he got the best Christmas present ever... and so did I...
what timing...a joyful season indeed!

Curiosity cured...and a heart-warmer

Thanks for all the feedback on my question.... If blogger had a "like" button I would have "liked" all your comments. :)

I too feel FB can't serve the the need of what blogging serves...in so many ways. This is the "meat and potatoes" of our life...here in writing, on the blog. It is also serves as a journaling purpose, as well as a reference... documenting a journey like Hudson's, it's nice to look back...it's easy to forget all we've endured when your in the trenches, when the road takes so many detours unexpectedly....it's a place where I can go to recall.
I also dislike FB for the "fluff"...and the whole "look at ME" narcissistic approach. I too have seen some gross and cruel things posted and its sad but inevitable.
On the flip side, there are some good things....
I like I can get a prayer request out quick and that I can receive requests too and know how to pray for others.
I like that those who I truly cared about and lost contact with from the past,are able to reconnect.
I like the convenience of sharing pics with family and friends and you can control the privacy (unlike blogging)
It is also a great tool to spread awareness...

I wasn't ever really considering stopping blogging all together because of FB, I really dont use it that much, I don't think, and I could never lay my heart or Hudson journey out on that platform. I may wax and wane on my blogging but in the end this is where I will go to lay my heart out and type my thoughts.





So.....
Now for my heart warming tid-bit....because I just thought this was pretty darn sweet...
My sweet blogger friend, Clara Leigh, recently sent me a bunch of her mito bracelets that she makes with her kids. They make them to raise awareness and any money made is donated to the UMDF. When I got the package last week, the kids were very excited. We noticed she had made several different styles and Hailey of course had to have one. Hunter asked me if he could have one. I said "sure", and he picked one out. The bracelets are made with some sparkly, green and clear glass like beads. They have an awareness ribbon attached in silver. In my mind I was a bit surprised Hunter wanted one because it is a bracelet...and just not the most masculine thing to wear, and trust me, he is all boy!
So the next day I notice he is proudly wearing his bracelet outside the cuff of his uniform sleeve. Off to school we go. Then that night he had boy scouts, and again, his bracelet was on for all to see.
When he came home that night we had a conversation that went something like this....

H- "Mom, one of the kids at scouts came up to me and said I was a sissy because I was wearing a bracelet"

Me- "So, how did you handle that comment?"

H- "I looked him straight in the eye, told him it is NOT a girlie bracelet, but an awareness bracelet because I have a sick brother, and it stands for his mito disease."

Me "Wow Hunter, that was really great what you said and for standing up for yourself. What did he say to that?

H- "He just looked up, said nothing, and walked away"

I was super proud of him and how he handled this. I was also happy to hear when I asked him if at school if there was anyone making similar comments,he told me "no", that they were just more interested as to why he was wearing it and what it meant.

Yay for Hunter...
For having the courage to wear something that he knew might cause teasing and wearing it for the greater cause of his brother. For standing up for himself and Hudson and mito.

Proud of what this says about him,his character and love for Hudson.

Just curious...

Does anyone still read blogs, or is Facebook the new "blogger?"

Busy

The busy...
Some days I just don't know how I accomplish all that I have going on.
Between school, therapists,music lessons, work, friends, birthday parties, holidays, conferences, dr.appointments, community group,boy scouts, brownies (girl scouts),mommy dates....
I could go on and on...and I am sure I've forgotten other things we do daily...
But it just at some point catches up with me and some days I just have to fall apart.... do a whole lot of nothing...because I am one person trying to do it ALL...
So Saturday I didn't shower or get dressed until almost 3p.m and it was only because of being invited to a friends for dinner... I think I would have vegged all day otherwise!

Fall...
I LOVE this season.... Beautiful, crisp autumn days... Amazing colors all around...so much of Gods glorious beauty all over this time of year!
Love it!

Huds....
Hudson did much better on this last round of antibiotics...my gauge is how much I am suctioning. At his worst, I couldnt go anywhere without it... Including in my house... If I went upstairs, the machine followed...
I am happy to say... I have left it at home for short trips this week, and am using it waaay less. That didn't stop me from calling his pediatrician today for another 10 day prescription... Just to be on the safe side. I need to keep the "better streak" going...today I have noticed lots of sneezing, so not sure if we are dealing with a cold now...
and with the holidays next week...I certainly don't want to spend thanksgiving in the hospital, so proactive I am!

Gratitude...
In light of upcoming T- day, I am so grateful for today...
I got to meet a fellow blogger!

We have been following each others blogs a while now, and we were able to connect as they were coming to see family out here in WA.
There is nothing better to have not only the cyber connection, but also meet, hug,actually see those who you pray for...I was blessed to be able to have them at my house, and make us a brunch, and we just got to sit and chat...face to face!!!! They got to meet all 3 H's, and I got to meet almost their entire family...unfortunately their son who I pray for so often couldn't join us,
All in all,a super cool day for me!

I have gotten to meet a handful of fellow bloggers... There is really nothing better to take that connection a step further...I think so much of those who walk this by our side...I am so grateful for all of those who pray, support, and love us...I wish I could meet each and everyone of my cyber mito/seizure/sick-child/sn friends...it is a connection unlike any other!

(Thanks Shari and family for blessing my day!)

Hudson's normal?

Just a taste of what my sweet boy goes through...
If I could, I would just have the suction machine constantly attached to his mouth...I have never used this device so much on a daily basis.
It has been over a month of this...and what you will see is not him at his worst.
Tonight I will start him on yet another round of Augmentin....
I have limited our "outings" and our gatherings to avoid exposure. Yesterday was the first time in a month I went to the Y....and even after I explained to the caregivers what's been going on, at pick up I heard about the coughing and gunk they were wiping....I don't want to be looked at as one of "those moms" you know...the kind that drop their sick kids off, not caring how many kids get sick because of it. No...I don't drop my already sick, now sick-sick kid off just to go work out...but I miss working out...an hour of "me time"...but it looks as though it's not happening anytime soon.

In the video I lift his pajama top so you can see how hard his little frame is working with all this gunk...it is just heartbreaking. On top of all meds, I am now trying to keep him on a steady dose of Claritin, in case any of it is allergy related. I don't know what else to do...I feel helpless at times,most of the time... and it sucks!

I just wish...on top of everything else he goes through...we could clear this up...is it really only the beginning of the cold/flu season? Ugh...


((((((Sigh.....)))))







Hudson had a tonic seizure and this was at the tail end as it was releasing its grip on him

Frustrated

My head and heart really are not into this blog lately, but I felt I owed it to my faithful friends to at least let you know we are o.k.

If I am not present here, you now know I am not lost, just not feeling like coming here lately.
This seems to happen in seasons for me. I do need prayer, personally...God knows what you don't and I trust in Him and his faithfulness and direction.

Hudson needs your prayers as well...it's been a month of sickness, 2 rounds of antibiotics, a trip to the E.R., and today, once again, a few days after being off the antibiotics, his fever is back. He is soaking his neck and collar with goooo....all the time, all day. Today he has already had 5 tonic seizures...another indicator he is fighting, again.

All you can do for us is pray...

Were back....

In the E.R.:(

Mitochondrial Disease

Sick ...antibiotics....again!

Hudson is having some rough days.

Not sure if it's the same crud he had a few weeks ago and never fully got out of his system or if this is something new

Its the same old thing.....

Fever started Sunday with lots of coughing and lethargy. My mom reminded me of the antibiotic I had on hand from L.V. so I instantly got it and started him up on it as I only had used a few days of the 14 day rx. The fever never came back but oh my gosh.....

He is so gunky.... Lethargic.....
I'm worried if this doesn't clear up or the fever comes back after this round of antibiotics, we will be bound for the hospital.

Can't believe this is only the beginning of the season and he has been sick so much. You would not believe the amount of secretions draining out his little mouth....it is just ridiculous! I can't give him the Glycopyrolate for secretions when he is sick like this because of the volume...it just gets too thick and hard for him to handle. So his shirts are soaked around the collar these days.

Seizures remain....but grateful they are staying small in numbers, 3-5 a day. Wish it was none.
He sounds horrible but for the most part the oximiter shows his sats in the low to mid 90's....I guess I just have to sit and wait to see if this resolves itself this time around.

It's been a rough week for me... With Hudson sick, I can't take him to the Y, so no working out this week which makes me feel sluggish and yuck!

I'm just concerned about H....As always, he is in need of prayer.

Prayers needed...(Saturday update...)

Our sweet friend Talon is in need of your prayers. He has been in status epilepticus and several meds tried have failed to stop this constant state of seizures.
Please lift this family and Talon in your prayers....wisdom for his doctors, and for this seizure state to stop so his body can rest and regain strength.

You can visit him and leave words of encouragement on his amazing moms blog....
http://tallysfightwithmito.blogspot.com
Or just find it on my blog list on the side bar.

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

10/8/11

My heart is aching for Talon and his family....
Your prayers are still needed as they are now putting him on a ventilator.
Thanks to all who are praying for this little soldier and their family...they are relying on prayer and many of us know that's everything in these scary times...

Friends

There is one main direction I would like to see this post go in....
But I can feel it may go into 2 different directions.

First and foremost...I have some AMAZING friends...
But before I go into that, I want to talk about friendship in general...
I guess part 1 of this 2 part post...

Friendships in my life have evolved so much from the time I was a little girl til now.
Growing up I had my neighbor friend, who was almost like a sister and we played and were friends for most of the past 30 something years.

In grade school I had my "group" of friends....

There were those moments when I was young, and just cared about being " popular" and having a ton of friends...didn't matter if there was substance, it was just important to be popular, be liked, feel important, and in friendship with many...

When I got out of high school, I remember being so excited to go to college and meet all new friends, a part of turning that chapter in my life came new friends.
I was a "party" girl, went to lots of parties, and attracted friends who liked the same.

Once I was out in the working world....I had more male friends than female. I had 2 really good female friends in Chicago who I would go out with after work, or on weekends.


Once I got married, moved back to WA, and had kids, a whole other group of friends formed...my "mom" friends...


All in all, I can say friendships throughout my life have come and gone. Season of friendships, if you will...and today friendship has a completely different meaning to me than it did for most of my 3* years.

There is one pivotal moment in my life where friendship took on a whole new meaning...
My third child was born, my life took a turn that I could never prepare for, I began to look at things in a whole new light...once the dust settled.

My time was no longer mine. Not in a way a mom looses herself or her time to her kids, but in a way having a very sick child consumes all your time and energy. It is completely different, and only by living in my shoes you would know what I mean...

Today I am very aware of where my time and energy goes. Outside of my family, I give what I am able to where I am most invested. I don't have time to waste on being nice and having small talk with acquaintances. I really don't care about being the most popular or having truck loads of friends...it is just not important to me.
I have realized having a 30 some odd year friendship with a childhood friend means nothing if you grow apart, have nothing in common by adulthood, and it sucks the life out of you.
I have realized I am rich with a few friends who will walk through the grit of life with me as I will with them...as well as rejoice in those moments of joy in life.

Another important part of my friendships today centers on faith in Jesus.
I have found my friendships and relationships in general, are most successful when Christ is the center....it's that foundation of building something on a rock vs. sand.

Then there is THIS world of friendship...
the blogging friends who do live in my shoes, who "get it" and we all know this takes time and energy.. and reading and praying for all of our friends who are living a parallel life to ours...it is so important to me to maintain those friendships...they have become a life line that gets me through some of the darkest,roughest patches of Hudson and all the pain.

I am not saying I am "right" in how I view friendships...
I am certain I am "short" with some acquaintances, because I don't want to waste my time on "small talk".... I don't care about being friends with everyone in my kids classes...I may come across aloof because of it. I am certain typical moms don't "get" my world, or how difficult things can be....I hate being pitied....HATE it! So maybe I am now difficult to be friends with because of my circumstances....


What I am certain of....

Those who I do carve out time and energy for....
I Love and adore, and I am so grateful for these friendships.

Which comes to part 2 of this post...

My dear, sweet friends....who happen to be neighbors....who happen to be my brother and sister in Christ...

A 14 year friendship....we have walked, talked, cried, drank coffee, partied together, movie nights, dinners...you name it.
They have been through my pregnancies, kids birthday parties, holidays...

And now this....

They own a coffee shop here in town...
During Mitochondrial Awareness Week, Shannon made the first flyer. It talks about what Mito is and how it affects Hudson...a very abbreviated version.
The following week, she posted flyer #2....allowing people to help through donations, and then by carving October 4, as the day they would take a portion of profits from all drink sales and sandwich sales, and put it towards the UMDF as well.

Isn't that wonderful?

What is even more amazing about my dear friends, is that they have had their share of pain in the past year. Danny has been out of work for almost a year....his dad has been really, really sick,they have fears,worries, and are stressed as the coffee shop can't sustain them which can lead to some really difficult decisions...

And yet in spite of all the crap they are going through...they are on mission to help Hudson, to raise money not for their survival...
But for his survival.....I find that amazing, jaw dropping, and so incredibly selfless and loving.




I am proud to say...
These friends of mine raised $416.04!!!!!

They worked hard tonight...all in the name of friendship and hope...

$416.04 towards finding a cure for Hudson and the mito world...
The money will be donated to the UMDF in Hudson's name...that # may grow as they will continue to take donations through the rest of the week.

How cool are they? How lucky I am to call them my friends!!!
The craziest part...they have more up their sleeve for Hudson and the mito world, but I am not allowed to share just yet...

A weekend full of blessings...

Hailey playing teacher in H's new bed

Trying out his new bed after we got it all set up

Fast asleep on his new sleep safe bed...with c-pap on!









I have had this on my mind quite a bit lately...

Thinking about the transition from crib to bed. There are so many factors to consider when transitioning Hudson out of anything....this transition I knew would cost money, would also be hard on me physically...because my plan was to put a matress on the floor...eventually.
But I have people all around me, who truly care about Hudson and I, and our well being. I know this transition would be brutal on my back, having to lift him from the floor level. Hudson's clinic P.T. is always looking out for me and H...he knew a gal that was getting rid of 2
Sleep Safe Beds...he gave me her phone number and told me to call her and explain my situation. We talked a while and by the end our call,She blessed me by giving me this bed for Hudson! I love it! We got it Saturday and Fred put it together Sunday...tonight is his first night in his new big boy bed. I can't believe what a relief it is on not only a financial end, but for his safety and the health of my back.
It is a twin size bed...I can lay with him,there are railings that swing up to enclose him for safety. Hailey has already crawled in to be teacher and play on the iPad with him....I can't thank Marcy enough for gifting this to us!

Saturday night I had the best date EVER! My Hunter and I went out...just the two of us...I adore this kid and absolutely love spending time with him.
I got to take him to his very first concert!
We saw Casting Crowns with Sanctus Real and The Afters. So amazing to spend that kind of time with my son....fantastic music and worshiping Jesus....I am certain it will be in his (and my) memory bank forever!

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.