too blue to blog part II

Hi, Deb.

Does Hudson still have a fever?

Dr. Saneto read the EEG: hypsarrythmia, epileptic spasms – so nothing new or different from previous EEGs.

He promises he’ll write that letter. I will keep on him!

Dr. Saneto is going to contact Dr. Carter and try to get you in sooner. I’ll follow up on Monday.

Pam

Need I say more?




Oh wait, there is MORE!!!!!!!!!







Still don't feel like blogging, talking, eating, smiling.............



but I am...I'm here...reluctantly.....


and only because Hudson needs prayer and I know some of you who follow us pray...daily for the needs of our family.

and some of you are good friends....and because I know you want to call me and reach out....... I'd rather stay in my cocoon right now ......

Sorry mom....it is even hard to see you right now....I just want to hide....from everything

I feel like if I blog, or see friends, or family I am too depressing to be around, talk to, be with

and I don't feel like faking it!!!!

I was feeling a bit better this morning, because good-bye's are the hardest but once it's done...I have no choice but to move on. So like I said, I was feeling better.

Hudson had a GI appointment this morning. On the way he had a seizure like no other...a shrill of a cry I have never heard. Hunter even commented that it must be a new seizure, because he had never heard one like that before!

At our apt. we talked about his 2 hospital stays in Nov and Dec. and how for 6 months now we have been dealing with this gunky cough. I never really thought my appointment would lead to further GI testing, but when I told him the Dr. we were referred to couldn't see us until the end of March, he became very pro-active, which is great, but as I asked questions I did not like what I heard.
He figures we must rule out the "reflux" possibility as the problem of this cough/congestion, and since there is all this time before the pulmonary apt, he would like me to go with that crossed off the list as possibilities.

So......

On Tuesday at 11 a.m. we have to go for an upper GI. This will tell us if the Nissin is still in tact, which was the surgical procedure he had done way back in Dec. 2007 to prevent reflux and vomiting.
We then have to do a 24 hour PH Probe on Feb 8, where they will stick a probe down his nose and monitor for 24 hours to determine how much acid reflux is coming up.
If the nissin is in tact, it is unlikely reflux is the cause of the problem, however it could have loosened and still allow some refluxing.
If this seems to be the problem after having both tests done, the doctor prefers to have a line placed from G-tube, and have feeds go into his small intsetine for a period of time...if the gunk and cough gets better, we know this is the solution to the problem.
For me, I am really hoping this is not why he has the gunky cough. We have always done bolus feeds with Hudson since his G-tube was placed and since the small intestine is much smaller than the stomach, we would then have to put Hudson on a pump and he would be fed over a 12 hour period.

Selfishly, I don't want to feed him on a pump. I don't want something attached to him all day. I don't want to deal with yet another thing. I am very comfortable feeding him bolus feeds, it's quick and easy! I feel like we will be so restricted.
Again, jumping the gun...don't know this is the case...but it's possible...and the thought makes me unhappy.

The kicker was getting the email above on my blackberry, after I got in the car from this GI apt, which was a response from an email I sent last night. That is when the emotions and tears kicked in.

I feel defeated in all of this.

I feel alone.

I feel like prayers work for everyone else....

but us........

yet.... the only reason I am sitting pecking away right now is to get all/any prayer for my little guy, because I know you all are faithful in praying and I need you to know the latest.

We can't catch a break.

I am broken right now.

I am tired of this.

I am sick of hospitals.

I don't want Hudson to go through another scream fest......

to use all of the little energy he has, to cry and fight and be terrified.

He deserves NONE of this.

Yet the suffering continues.........

and it feels endless........

When will this kid catch a break?

WHEN???????????

too blue to blog :(

Pics instead

Cuz my eyes burn from crying

my head hurts from crying

and my heart aches

because my other half is gone

Passed out right after probes were placed

Waking up to reality

a 5p.m.-8:30ish p.m. crying spell

Next day...probes off...bath done...back to good ole' Hudson

Wrong finger Huds!

(i think he was trying to give me the "finger")

 

Tuckered out ....wish I was doing that right now!

Were outa here

with a fever

Not sure when I will be up to blogging again...so don't worry if I am not present.....just not in the mood

in need of prayers as always

Sick or EEG Exhaustion?

We are home now, but just as we were getting discharged and I was holding H, I noticed his hands and feet were very cold but his torso felt very warm to me. I asked the nurse to take his temp and sure enough, he is running a low grade fever...100.4
She said it is either the stress of the EEG on his body or its illness.
Gave him tylenol before we left. Took his temp when we got home and it is 100.8, so I have know given Motrin.
He is super gunky-i am costantly suctioning him-nothing new,just added stress on his body.
Please pray he is not sick again...with Paul leaving tomorrow and as quickly as he spirals I am feeling
very on edge. I am also exhausted and feeling drained...

3 hour delay

First of all...I don't enjoy blogging on my blackberry...somehow I lost this post and now am doing it all over...been a frustrating day...

3 hour delay...due to the "new girl" checking us in wrong AND the people before us, who occupied our inpatient room,were in no rush to leave the inn!

Hudson screamed till he was bright red in the face,kicked his moccasins off his feet,and his plastic I.D. bracelet and went about like this with all 29 probes being glued to his head...can't blame him...in fact I would be worried if he didn't react that way...however...
guess what Mr. H-man has been doing since he has been hooked up?

Yep...snoozing...soundly...peacefully...

I am not too worried...at the rate he seizes were bound to get some, but I want a typical day recorded...thisb is NOT a typical day...sleeping peacefully during the day!

Good thing he looks so stinkin cute with his EEG turban...I will give you a visual since I can't post a pic from my blkberry (or at least I don't know how!)
Imagine an old european wash lady...you know with the little twisted knot at the forehead?

rocked to the core...

that's how i felt as I sat in church today...I have never heard such a quiet group of people, mesmerized by the images, many of us in tears.

Pastor Mark stepped away from our current sermon series to walk Mars Hill through his recent trip to Haiiti, as he brought the MH camera crew with him, and had heart-wrenching video from his 32 hours in Haiiti.
The whole trip, as he explained it, was clearly a miracle...from start to finish. I would not do it justice to try and tell you what I heard and saw.
For those of you who feel moved in some way to help Haitti, but don't know how or where to put your money, I ask you to watch what I and thousands of Mars Hill members members watched today. I will post the video on my blog when it becomes available...likely Tuesday. I know there are so many images on t.v. and in the media, but for me....this was like no other, and I have been moved in a way I can't describe.

It gave me a lot of perspective in the upcoming week....
tomorrow...admitting Hudson for his 24 hr EEG.....seeing my husband drive away to Las Vegas on Wednesday....

Lots of perspective was laid on my heart...I can't really explain....you have to watch what I saw today to know the somber way I feel.

I am so grateful for the facilities, and doctors we have.
the medicines that I often cuss up and down because of all their horrific side effects...but the reality is we have options...we have means, and treatments and so much that is available for us to try.

I have been so concerned about our financial situation in the upcoming months, with trying to balance two homes and all the uncertainty...then I went to church and watched today....and felt it was laid on my heart to give during the second offering for Haiti....I felt so silly, so selfish over my money worries the past few weeks. I was amazed how a mere $15.00 U.S. can help a injured Haitian. Again, must see the video. There is no amount too small to help....bottom line.

In my world...the things I am dealing with are monumental, uncertain, scary...but.....again.....perspective.....


If you belong to a church that wants to get involved in helping Haiti, please pass this web site on to your pastor http://churcheshelpingchurches.com/  (there are clips from their visit but this is not what i am referring to above)


Please keep us in prayer over Monday and Tuesday...I would love some answers with our 24 hour EEG. We get the probes put on at 10 a.m.  tomorrow. (of course seizures seem to have improved, only 2 today...go figure!)

I have a feeling this won't be as easy as last time we did one of these. Hudson was much smaller and less alert and active. We gave him a very good haircut tonight...........he had some "big hair" ...........not EEG friendly!
So I just am hoping for some answers...I would hate to put him through this procedure and not gain some kind of new perspective with what is going on his brain.
                                                    BIG hair before pics....

 

                       EEG Buzz cut.........

As I put my brave face on, it will still be an emotional week, for all of us, in so many ways.
Paul grabbed me tonight....
with tear filled eyes.....
it showed me how much of this he has been holding back....
because I have cried to him several times.....
but he tries to stay so strong, not letting emotion show, (I am weak and emotional enough for both of us)but..............
tonight I saw the pain in his face...the pain of going to Vegas without us, his family.
 
Thanks for your support this week~Deb

a little this.....a little that....

Not sure where this post is going....

my mind is full of lots of random thoughts, and not sure if I should even be doing this

right now...cuz I am tired.....but here goes....

I'll start off with our family weekend...it was nice. The kids were happy to be under one roof. I have noticed they have already started getting used to coming to me for EVERYTHING!
Dad is home....but all I hear is..."MOM....MOM....MOM...." for everything....it doesn't bother me when it's just me, but give me a break, kids....I just need them to yell for their Dad...... at least when he is home!
I have also noticed that my dear husband has a very difficult time getting out of work mode. I guess when it consumes the majority of your day for 10 days straight....soon to be 14....it just simply becomes who he is. From day one, ever since I have been with him, I have known him to be a work-a-holic, so really doesn't surprise me. However, I need him to work on leaving work behind once home, because our time together needs to be focused on the family. I know it will be a struggle for him, and I don't want to be a nagging wife, I just want him completely, when he is here, for the kids as well as me!
Sunday we ended up having to compromise...I knew he wasn't thrilled about going out for dinner, he would have for my sake, to get me out, but I made other plans...and actually it worked perfect for both of us....
My mom took the kids, I picked up a movie, Chinese food and we laid a blanket on our bed, and picnicked by candlelight...sometimes it is soooo nice to be home...without kids....and we never are home alone...really a treat! In the end, we were both happy!

Paul left Tuesday for Vegas. He flew and will fly home Friday. The next time he heads out there (next week) will be to reside there. Found out tonight he got an apartment. Things seem to be falling into place. and to be totally honest...we really didn't talk much about the upcoming months or weeks for that matter while he was home last weekend. It's too much...at least for me...and I just wanted to enjoy our time together...not stress and waste precious time worrying about stuff that is out of our hands. I think I am slowly getting to a place of letting go of the worry. The money is what stresses me the most...but somehow, we have always made it in what seems to be difficult circumstances...so I just keep thinking God will see us through as we (I) place it in his hands.

Started my job today. Yeah for me. Haven't had a job in...uummmm...I think 15 or 16 years! Seriously!
Have to say didn't start to well. I brought Hudson with me as the gal who hired me told me absolutely bring any of my children, especially Hudson. I am driving, to be there at 9a.m. and Hudson has a seizure in the car, followed by coughing, gagging and I kept praying the sounds were not going to result in vomit...which I was picturing all over his clothes, not having anything to change him in. He choked it all back, thankfully, and once we arrived and I stroller-ed him in I introduced us to the gal I would be working with. Not so friendly, but oh well. Hudson started coughing again, choking on the thick mucous, and made a retching noise, and he vomited some thick mucous...thankfully it was no formula so it didn't saturate him or stink him up...BUT it lead to a very upset, crying boy. The gal just looked at me and Hudson and went about her business. No care or concern...which was fine, but made me a bit uncomfortable. I kept thinking... why did my first day have to start like this? why?
Because there was no concern on her end, I asked if she was told about Hudson and she one-answeredly said "Yes." I did get him calmed after stepping outside with him and the rest of the day went smoother. He did have a seizure where he cried out. She looked at him when the crying started and I asked if she knew he had seizures and she one-answeredly say "yes" and that was  it.... once again! OK, I don't need to be B.F.'s  with my new working partner...I realize this and it's o.k....at least I have a job, God provided, and it is all good!

Haiti....seriously so sad. Makes me grateful for all we have. Makes me wish I had the means and way to help these people. It is just so sad what has happened there. i guess another quake hit today (after-shock) but still pretty big. Our pastor, Mark Driscoll, went out there to try and rebuild churches and pray over the people and has been keeping Mars Hill updated through twitter and the MH bog and now this video. 
 Pretty awesome how MH jumps in and helps....very risky and scary to be there with the sense of desperation among the people...and yet Pastor Mark and so many others drop everything to be gods hands and feet for those who are so in need.

Really don't want to complain too much...about anything in my life...especially when I see the images in Haiti.

So, that being said...my thoughts on being not only the woman of the house but the "man" too... at least while my man is not here, would bring about lots of moaning and whining, especially with what I attempted to do last night. I really don't know what posessed me to buy 2 new toilet seats yesterday, other than it popped in my head while shopping at Target, and well, I wanted to replace 2/3 bathrooms. I really didn't think much of the whole changing out the potty seat process, until I tried tackling it. Let me tell you....there is a reason god made me female...I am sure for a guy it is like changing a light bulb...you screw in, you screw out....done in minutes.....not so easy for me. I am a pretty bright girl, just not when it comes to stuff my brain wasn't wired for...like changing toilet seats!!! Anyways, it took me 1 1/2 hours to take off 2 seats and replace 2 seats. My challenge in the process was removing those things...and to be honest...I haven't been that close to a toilet seat since my late high school/early college days...did not bring back any fond memories...at all...
So, I am going to have to find me a "handy man" because there is nothing handy about me, crouching under toilets, with a wrench, and foul language streaming through my head causing me to have a "potty mouth" ,no pun intended, (:  as I wonder why I even thought I could do it....
until I did, and it was done (an hour and a half later with sweat streaming down my face)...but really....I don't want to do anymore of that kind of stuff!

Seizures...
I will say Hudson's seizures are still chugging right along. I would say I have seen a slight change. He hasn't been waking as much to seize...or maybe I am just sleeping through it? That could be! Anyways, I am still seeing different kinds..tonics, spasms, clusters, startles, just slightly less frequent. I can't say it's the drug, in fact likely not...he started Sat. night and gets 1-5mg pill every other night for 2 weeks, then once a day. Tonight will be his 3rd dose. So maybe it is the increase in vitamins in his mito- cocktail...you know, it's the never-ending-guessing game! He was pretty off today and I am praying it is not the drug reaction. More irritable, more crying, he was pretty overtired though...tonight I put him down at 8 and he was out and I have not heard a peep. Getting him fed, dressed, up and out this morning is not his usual routine, I am hoping that is what through him off, and not the med!

Monday the 24 hr EEG. Paul will be home with the other 2 H's and I in the hospital with little H.
I hate to say it, but I now think hypsarythmia is going to still be present. Just because of all the weird spasms and clusters I have been seeing lately. Months ago I would have sworn they were likely not going to show up, but cruel reality is not going to slap me in the face and put me in a funk as it always does...I go prepared to hear the worst....hypsarythmia...blahhh!!!!!!

I then will come home to my husband preparing and ready to road trip to Vegas later next week.
Can't believe this is actually our reality.
Seems so weird.
I could not have imagined this would be another new "normal", another adjustment in our lives....after all we have gone through the last 2 years
I am trying to look at it as a "season" in our lives.
I live day to day.
I don't know what tomorrow will bring.
For any of us.

I  do know...

I am so blessed to have amazing family, friends, here to support me and love our family. I have been touched by Gods hands.... his people, reaching out to me and my family (yes, J...you!) praying, guiding, lifting us up through some of the most difficult, darkest days, many of those that may still lie ahead........
and yet in the midst of it all..........
His light......  through his people,  is shining all around me...which enables me to surrender it all to God....

God.........

a loving, always watching-over-his-kids kind of father,
love -knows- no- bounds father,
only wants the best for his children father....

my children........

Paul..........

........me.

We are in His care....we treasure your prayers.

The influence of "comments"

The whole seizure increase has taken a toll this week....as you all know.

I am very lucky to have direct access to Dr.S' nurse either by phone or email AND access to Dr. S through his email. I have used both... many times, but I try not to abuse it and generally I will "bug" Pam (the nurse) before I will go directly to Dr. S.... I just don't want to be looked at as a "nuisance," or a "pain" in the you know-what, but I have to say, Heidi, it is so nice knowing you are out there....because you have the same resources, same docs, know them as I....I saw your comment in seizure saturated, and thought maybe I should send an email to Pam. I just assumed they would respond telling me would figure this whole thing out after the EEG. It wasn't totally sitting well with me though, because yesterday was another ugly seizure day, and I mentioned to my mom later in the day that I was going to email Pam, regardless of their response....because it can't "hurt".....but then I didn't. I got busy....with the kids... making a "welcome home cake" for Paul...(competes with your back to school cake Val! ) I love the "turd" looking chocolates Hailey had to place on top of it! 

managing snotty mucous and seizures, poop (hudson's) and baths..... and all of the sudden the day was over.
This morning, I heard Hudson cry out at 6 a.m. seizing. It happened after I put him to bed last night too.
So, I got on the computer...thinking I should probably send out an email. I got sidetracked on my blog, saw another comment from Heidi this morning on Wednesday's post, and went into my email and shot an email to Pam and cc'd Dr. S.




Hudson has had a really bad week of seizures and I can't figure out what is going on.

He is having all kinds of seizures it seems and now they seem to even be interrupting his sleep!
In a day he has seizures that look like a "startle" with his arms going out to his sides and then he cries as id it scares him (these are the most common lately) He has been waking to seize and this one typically starts with a seizure and goes in to a cluster of spasms (which I thought we were done with!) I have also seen very hard, bad tonics, but these are maybe once a day. In the evening, after about 1-2 hours after he has fallen asleep, I hear him scream out, when I go in his room he is sleeping...very odd.

I know we have our EEG coming up, I just can't imagine it continuing like this. I feel so sorry for him.
 For so long, I wasn't seeing any clusters, I thought we were done with the I.S., seizures had seem to really improve.
 In the hospital in December, was when I saw his seizures become erratic, then when we got home they went back to what I call "startle seizures" (the single seizure that begins like he is startled which is what he was having prior to hospitalization) so I thought that getting back on normal schedule, typical sleep pattern once we were home, had something to do with the seizure improvement.

Any thoughts are appreciated, right now the 25th seems like a very long time to wait to see what is going on!

Thanks for your time,

Debbie Austin

(Hudson Austin)




This afternoon the phone rang...caller I.D. read...Seattle Children's Hospital .....it was Pam.


Boy...was I WRONG....she had talked to Dr. S and he had her call me with a plan. 


Before going in to the details of our conversation....thank you Heidi....thank you for your input, I am not sure my email would have gone out had you not kept asking if I had contacted them. I think God used you, as the "little voice" to get me to put aside pride or feeling stupid, and just letting them know what we are currently dealing with....I guess it is a good lesson in how the "comment" section of a blog can really influence us bloggers. I am grateful that I am in contact with others that have the same nuero...that's huge too!


So......this is the deal......


Dr. Saneto wants to increase the Depakote from 2.5mls a.m/.3mls. p.m. to 3mls/3mls. He also wants to add on Lamictal at a very slow rate. I believe I will give it to him every other day for 2 weeks and then every day. I don't have it yet, so I am not completely certain. She also said that I should increase his vitamins during this difficult time, doubling the dose on his levocarntine, vitamin C, COQ10, Creatine. 
We talked about the fact that Hudson is still mucousy, coughing up all this thick goop, and that it never seems to end...seriously...I think it is at least 6 months of this cough/mucous. So, she agreed that we need to figure out what is causing this and get to the bottom of it. Dr. S is referring us to Dr. Carter in Pulmonary. Heidi, do you know him? I don't know if Jack has respiratory issues.
She said to increase his water intake to thin out his secretions, and put the humidifier on all day in whatever room he is in.

So then we started talking about why the increase in seizures. She made a good point. We know Hudson's seizures are strictly due to lack of producing energy. The fact that daily Hudson is coughing, and trying to handle all this junk he coughs up, and then it makes it harder for him to breathe....all of this is very depleting on his body...which could be causing the increase in seizures, because the little energy he does have is being used towards handling this extra stress on his body. Makes sense to me.... so we will get all of these changes in place and see how it affects the seizures.


So...to all my "seizure mommies and daddies".......if any of your kiddos have been on or are on Lamictal, could you give me your input  on side effects, seizure control, etc. I have heard of this drug, but know nothing about it. I do know every child is different and there maybe opposing views but I am open to hearing about all experiences with this drug.


Quick...
the kids couldn't wait up for Paul to get in last night. Finally at 10:30 they hit their beds. At 5 a.m. I heard Hunter open our bedroom door, walk to Paul's side of the bed, look to see if he was there as I heard the whisper "daddy's home" and he ran back to bed. Too cute. Until 7 a.m.... both kids came in our room, to confirm to one another that "he is here!" It's been nice to be home...all of us...together!


I am making a pot roast dinner with the works...mashed potato's, gravy, carrots, green beans....Paul's ready for home cooking after eating out for 10 days. (By Sunday.... he will be taking me out to dinner though....without kids!)


Off to finish cooking.....



As always we could use prayers with our new plan in place!

Trying to find happiness in the midst of tears...

The day has just began and already I have suctioned thick goop out of Hudson's mouth several times...the seizures make him loaded with secretions and mucous. He has woken up twice now....
the last time, I thought he was up for the day, and again started loading up on the gunk, choking a bit, and then as I hold him... kissing his sweet forehead, I feel it...the tightening of his little body and the cries start(startle seizure)...and the vicious cycle of more mucous, more junk, choking and coughing, and the thought that his first feed may be coming back up.... all over us!
I ran him upstairs to the suction machine and start going for it....I love getting the "big ones" ......I know it's gross, but if I have to go in his mouth was this big plastic tube, which makes me want to gag thinking about it, but then I have great satisfaction seeing it hosed right out of his mouth...poor thing though....
he had a dry heave/burp and his little forehead  was getting all sweated up.
I turned the machine off, and assured him I was done.
His eyes started to get heave as I was holding him in my arms.
As I sat on the floor...with his tired, fragile body in my arms, the tears started flowing.
I pray.
I cry.
I pray.
Why?
Why does he have to go through so much?
This little person is so helpless, so innocent...the only time his body seems to be at some peace is when he is sleeping...and now that even seems to get racked with seizures! The Lord knows I would trade places with him in a heartbeat...I would gladly take on his fight...his physical fight, so he could know peace.

I laid him in my bed.

I know my blog has been pretty depressing lately...but hey, that's life...certainly no bowls of cherries around here...why pretend?
I want to be up-beat...trust me...focusing on the negative is not my nature.

Keeping myself  busy is my way of focusing on other things.

So I clean....since Paul has been gone...I have cleaned and rearranged Hunter and Hailey's room, Hudson's room has some changes too...it has also been really rainy here (not like that's a surprise!) and I hate taking Hudson out in this dreary weather, so pretty much all week we have just stayed home...which has helped for me to get caught up on stuff.

If you came over to my house...it looks like love threw up all over kitchen and living room...yesterday I pulled out the Valentine decor. My philosophy is 1 month before the holiday... it can go up...so why not....it was pouring outside yesterday and I knew the kids would be thrilled....and they were...which makes me happy!

So my days have been rough...I cry often...my heart aches...my mind races...

but in the midst of all the gloom...I still can find my moments of happiness....

(not in any type of order...just what comes to mind)

* Hudson resting peacefully

* Tight squeezes from my 2 H's
*Text messages from my hubby
*homework completed
*having a glass of vino with my mom in the evening
*friends love and encouragement...emails..... your comments left...love all of u!
*American Idol starting last night!!!!!! (yes, i like reality junk!)
*seeing the smiles at the skate park (that was after my heart-break post on sat.)

*Huds looking in my eyes
*Huds faint smiles
*Huds wrapping his arm around my neck...like he means to do it!
*clean house (lasts while the kids are in school anyways!)
*Fred...the dad I never had
*Cake Boss...it's our new family favorite show (maybe it has something to do with living in Chicago and our polish/italian family (?) cracks me up....and the cakes are AMAZING!!!!
*Mars Hill (church)
But....
my biggest :) for the day ........

Tomorrow night (late)....... daddy comes home.....and we have a 4 day weekend ahead as a family!!!!!!!!!!!!!!!

:) :) :) :) :) Deb

Seizure saturated!

It's been bad...really bad, awful, ugly, seizure day....days.

I don't know what is going on...I swear every type of seizures just wants to invade my baby's body, and now...the poor kid can't even sleep peacefully!

Today...I have seen....

* The strongest tonic seizures in Hudson history...it grabbed him so hard, and so tight, and every time he tried to come out of it, and his stiffened arms and legs would try to release...it would try and grab him all over again, but couldn't quite grasp him like the first time.....

* Which was followed by a lovely cluster of spasms....maybe 15 (?) I used to count...I thought I was done with those days...the days of counting spasms....ughhh!

* Throughout the day....while awake....the not-as -ugly seizures...the ones where he looks like he has had a startle, he cries, as if it scared him, and that's it....several of those today....those have been the "usual"... the past month.

* There has been the sudden cry out in the middle of deep sleep...just happened about an hour and a half after putting him to bed tonight....out of being sound asleep...I catch the tail end by the time I get my monitor on....if it is in the middle of the night, I run in his room, and he is sleeping...after just hearing him shriek.....so bizarre...this is all new.

What is going on? I have even been questioning myself....have I forgotten a med? A vitamin? What have I done different? What is this tail-spin of seizures, and why are they hitting him in his sleep now?

(oh, i forgot one...)

*For the past few mornings he wakes to seizures too...can you imagine, waking to seize?

It only knocks him back down, like it did this morning, and he ended up sleeping until 1 p.m. which is highly unusual...he missed his oral therapy, cuz she nor I had the heart to wake him up. At 1, when he woke...about 15 minutes later, a little "play time" on his tummy...me holding his little elbows under him, so he can work on lifting his head....guess what....slam....the tonic seizure I mentioned earlier.

Sleep has not been a huge coorelation to his seizures....except in the beginning, when the I.S. first started....the clusters came always after waking, and then as he would tire. I thought the past few months....I thought we kissed those ugly I.S. monster things goodbye....now I am worried he is still having I.S. along with every other seizure possible!
I guess that will be answered soon enough...our 24 hour EEG on the 25th...I better see every seizure rear its ugly head...you seizure parents know what I mean...its the ONLY time you WANT to see seizures...to get answers...to get the best help. I did get good news after speaking to Dr. S scheduler last week. I asked if would see him during our hospital stay, and she told me he was the attending nuero while we are in the hospital...good news...cuz I want to go home with answers...and a plan!

Seriously though...I need a happy moment....because I am on overload....not sleeping well at night....awake and thinking....and it blows to be awake, thinking.... and stressing about everything.......

I have told myself "one day at a time...don't look ahead, try to predict the future...or worry about all that is completely out of my hands...take it day by day."

Really, I am trying to give it all to God...but I know I haven't...because I wouldn't be waking, sleepless, worrying about everything! Knowing He is handling it would give me peace. But instead I am trying to carry it all on my shoulders....the weight of life today....too much.

I have to share...this is really bad....and could possible have something to do with lack of sleep (?)................

I went to my mom's for dinner last night, Hudson was having an unusually hard time....crying...lots of dirty diapers...not a good night for him. I have him in my arms, and am at the front door of my house with the other 2, and we get in the house and I go about getting all 3 ready for and to bed. This morning, when it was time to take Hunter and Hailey to school, and they are waiting in the car for me, and I am panicking because I can't find my keys and although we only live about a 5 minute drive from the school.....they were tardy every day last week but 1 day....so I vow... this week they will get to school on time... starting off with Monday, but I can't find my flipping keys!!!!!!!! After racing through the house like a mad women (thank goodness the kids were in the car)
I open my front door and guess what was dangling from my door knob?
Yep...my keys!
Thankfully I set our house security alarm every night...but helloooo!!!???!!!.....

Oh my...I think I am hitting Hudson's melatonin bottle...1 mg tabs...I wonder how many it would take to get me to sleep and stay asleep...hmmm....time to get off the computer...give Huds his last feed/meds and pray I sleep!


The sudden seizure saturation...well, it will now consume me, and put the other things on the back burner...for the moment....I have a way of worrying about it all, at the same time...so if you see me....and I look super sleep deprived...you know why!

(and yes, i have checked twice now...my keys are sitting on the kitchen counter! :)

My heart is breaking...

I just got off the phone with Paul...He has been in Hawaii, on business, since Monday and won't be home till Thursday....10 days....a good trial run of our future. Before he left we talked, thinking since he was being sent to Hawaii for 10 days, that there should be no sense of urgency to have to be out in Vegas Feb. 1

He just told me he got a call yesterday, that they need/want him in the Corporate office (Vegas) asap...when is he going to get there? On top of that, he comes home Thursday (14th) and has been told  to fly to Vegas Monday and will be gone that whole week thru Friday.

The following week, he will need to drive out there.

He just told me all of this.

I guess it is hitting me hard.....

because it is the weekend.....

our family time..... like most families, and it just feels a bit weird and a bit lonely here without him.
Knowing this is going to be our "normal" feels like a lump in my throat right now...
wasn't expecting to feel this way today...taken me by surprise...
hearing his voice, just made me really miss him.

I actually think this time.....the kids are doing way better than I am........altho they don't know what lies ahead......that this is the beginning of our "February".....it looks like the 2nd month of the year is going to make it's way much quicker than expected for our family.

Not sure why I am feeling so weak in all of this...right now.

Typically...I am a pretty strong girl....

not needy....

very independent.....
self sufficient....(except for using "man tools" or putting things together, or killing spiders or any creepy crawly's for that matter...and the outdoor-maintenance stuff...all my husbands job!!!)

Time to look into the big browns...and know I am doing the right thing....for the other guy in my life who makes me heart-broken on a daily basis, with his illness. 

Think I will go dive into my kids right now...probably the best medicine for this broken heart!

They just don't get it....

It's the "look"....that's how I know they don't get it.

"They"....well, you know who you are...and honestly, many of them probably don't even read my blog....so many will continue, to not get it.

The circumstances in our lives has brought about some huge decisions that have had to be made...it has been far from easy....so much to consider.....and simply....scary....in every way. I blogged a bit about it a few months ago...it weighs heavy....as February slowly creeps up.....and that is the month my husband is suppose to be living in LasVegas.....to work....and live.....and it sucks....and it makes me uneasy, and thinking about it is simply overwhelming.

BUT.......the same is to be said if we were heading with him.

I really think many don't "get" why I can't move Hudson there.

You See.....

Mitochondrial Disease is not like cancer....where you can find an oncologist in any state, in every city, who knows about this disease and how to tackle it......it's not like heart disease,  Diabetes and many other diseases....where there has been major funding in research, and treatmnets and medications to help treat the disease......it doesn't matter where you live, there are docotors who know and specialize in common, well-known illnesses such as these.

Mitochondrial Disease is considered a "rare" disease.

Many times in conversations, I am asked "what is mitochondrial disease?"
Society doesn't know about this one......and the few who do, either are in the medical field or know someone suffering from it...........
that is......unless you are directly affected by it.......or watch your child suffer daily at the hands of this disease.

The only thing I can say......to make people understand.......to wipe the bewilderment off their face when they hear we will try and keep 2 homes, that the kids and I will be here through the entire school year while Paul comes home every other weekend to be with his family.........why we will spend summer and school breaks at our "2nd home".................................

Because..........If we moved our lives full time to Vegas.........

and God forbid something happened to Hudson.........

and he was no longer here................

I could never forgive myself.

I couldn't live with that.

So.....if that's not quite sinking in, then maybe the following will.
Some info on Hudson's Neuro on one of the mito web sites.
Just a quick reminder......to date......Hudson's illness began with epileptic seizures at 4 months old....ALL of his tests have come back normal, including his 2nd MRI/MRS in late summer 2009. Other than his abnormal EEG showing epileptic spasms, we had no cause until we got his muscle biopsy (Nov. 2008) reporting electron transport chain deficiency.....this is really all we know as far as Hudson and this disease. That's it!

Background on Dr. Russell Saneto, D.O., Ph.D., Assistant Professor

Families that are dealing with mitochondrial disease are very fortunate to have one of the leading mitochondrial specialists in the country right here in Seattle .  Dr. Russell Saneto is part of the University of Washington 's School of Medicine ; Pediatrics Department and is part of the Division of Neurology that is based at Seattle Children's and Regional Medical Center .  Dr. Saneto's clinical interests are in the areas of epilepsy, EEG-video telemetry and mitochondrial disorders.  His area of focus for research is the detection and treatment of pediatric epilepsies caused by mitochondrial disease. Dr. Saneto is boarded in Pediatrics by the American Board of Pediatrics and in Neurology, with special emphasis in Child Neurology by the American Board of Psychiatry and Neurology. 

Prior to coming to Seattle , Dr. Saneto did his pediatric residency, pediatric neurology fellowship and pediatric epilepsy fellowship at the Cleveland Clinic after completing medical school in three years and graduating from Des Moines University, School of Osteopathic Medicine and Health Sciences in 1994.

Prior to going to medical school Dr. Saneto received his PhD in human biochemical genetics at the University of Texas and did a postdoctoral fellowship in developmental neurobiology at UCLA.  He also spent time as an assistant professor in Cell Biology and Anatomy at Oregon Health Sciences University.

Dr. Saneto joined Seattle Children's and the University Of Washington School Of Medicine in the fall of 2001 and he is one of less than 50 doctors around the country that is focusing on mitochondrial disease and is the only doctor focusing on pediatric epilepsy associated with mitochondrial disease .  Dr. Saneto became interested in mitochondrial disease while a pediatric neurology fellow at the Cleveland Clinic as his mentor (Dr. Bruce Cohen) was interested in this disorder.

Dr. Saneto has a long-term vision "of Seattle and Seattle Children's becoming a Center of Excellence for the Northwest in regards to mitochondrial patient care and research." Please help make that vision a reality!

For additional information on The University of Washington School of Medicine Neurology program please go to www.peds.washington.edu/divisions/neuro/neuro.asp.

For additional information on Seattle Children's neurology program please go to Neurology | Seattle Children's. 

To contact Dr. Saneto directly please email him at russ.saneto@seattlechildrens.org

Please tell me YOU GET IT!?!?!?!?

The blue bin

I despise moments like this one....that happened to me today, as I was cleaning.
I am in a cleaning mood, I guess the new year makes me want to purge and tidy up.

Anyways, we have a ton of storage bins we keep, we use them for all kinds of things...holiday decor, kids clothes, memories, etc. I was cleaning a section in the garage and noticed some bins of clothes, that were once Hunter's and one day would be Hudson's.....they  had some room inside...so I decided to condense boxes. As I was doing this I opened the bottom bin of the stack. It was solid blue, so I couldn't see what was in the bin. As I lifted the cover, I felt my heart race, tears well, and this reflex of just wanting to throw the cover and shove the bin away, far away. 
I remember putting this bin together, with Hunter and Hailey's help. I was very pregnant at the time, and we were going through the kids toys, determining what would be the perfect toys to keep for Hudson. In it was the "popcorn pusher" and the musical pusher too...you know the one the kids toddle around the house with...it has the the long handle, and the round dome with all the balls that pop. The other is oval and rolls and plays music as they push. There was some "Thomas the Train" stuff, the "Little People" Noah's Ark, and some other stuff the kids really enjoyed at Hudson's age. I remember the excitement the kids and I felt as we packaged this up for him, dreaming about who he would be and the kids talking about how they would teach him about all of these toys, and how they played with them.

I hated coming across that box today. Another slap in the face by reality.

Another thing I had a hard time with as I was condensing....this may sound weird to those who don't understand, but....Hunter's "training underwear"....... they were in the next box that I will go into...... after the next growth spurt Hudson has. A part of me wanted to throw them away, the other part of me couldn't....because...what if that was a sign of me loosing all hope that someday Hudson couldn't be potty trained. I know chances are slim, at least the way things are going with him now...but couldn't that change....if seizures were controlled, if something is out there....waiting for us.....to help him?

I don't know.

I have left the box out. I have decided to see if Hudson's O.T., who is funded by the Elks, can use any of the toys for her case load of kids...or future kids. I will let her go through it on Wednesday.

I just hate returning to the memories....memories of a healthy baby.......only imagined... ....
only in my head through pregnancy, not fathoming he could be anything else but healthy.....I thought.....on May 14, 2007....I was holding a perfectly healthy baby boy....all 10 fingers...all 10 toes....passed all his tests....his ears worked.......everything seemed just fine.

For 3 months...in my mind...here on earth.......healthy.......Hudson would someday play with those toys we stored for him, and would be toddling around in Thomas the Train underpants as we we would potty train....it was short-lived....that idea of a healthy baby boy....I never imagined the next time I would open that blue bin..................
I would only see shattered dreams lying in that box. 

Why must a new year start this way?

With everyone still sleeping but Huds and I,I was looking forward to some quiet,snuggle time,just the 2 of us. After getting him fed and diaper changed, we sneak downstairs to the couch,with a big blanket over us, house still peaceful, and settle in for something I cherish...a still,quiet moment...just me and my guy.
Hudson was contently holding my hand when suddenly the grip become very tight,as his body was thrown into a tonic seizure...haven't seen one since the hospital...after the grip of his tonic looses its strength,Hudson passes out in my arms...HAPPY NEW YEAR TO US.