Where am I?

Certainly not in this blog, huh?

Wish I could say life has been quiet...nothing to report...
nope...can't say that...it's just the craziness of life, ya know?

No...you probably don't know...so where have I been while I have not been here?

I played...

• "wife" last week for 5 days

• chef to a very hungry home -cooked- meal- craving husband 

• nurse...as always...24 hours

• mom to 3....24 hours again!

• sleepless and tired.........cuz I am mom and nurse!

• birthday planner....my baby girl turns 6 on the 20th!

• tax preparer and filer....first time EVER! (Paul always took care of it!)

• detective....trying to solve the mystery of the strange, tremor-throwing up, only at night-coughing crazed mucoused Hudson! 

• video-ographer....trying to prove and get my suspicions on tape...the tremors, the tonics...all I can say is when the camera is on Hudson is STUBBORN! 

It has been seriously exhausting and the longer I stay away from blogging, the harder it is for me to come back.
It just takes to much time...
and that is unfortunate...
there is so much going on in this crazy household that to get my thoughts and days down in this blog....well, it seems overwhelming at times.

Time away makes it more overwhelming because it is never-ending.
Sitting at the computer...giving this blog that kind of time.....just seems impossible lately.
Makes me sad.

I appreciate the concern from fellow bloggers....and friends....who see me and know we still exist...but still worry.
I knew I was waaaay overdue, when my own mother made a comment the other day that I have not blogged in a very long time....
she sees and talks to me daily people....helloooo....apparently she gets clued in on my inner most feelings through this blog...I think she just likes reading what my heart is feeling....because she puts me on a mini pedestal and tells me how amazing she thinks I am....again....hellooo...I am her daughter!!!!

So....here I am.

This is where I have been.....

Playing wife..........

was GREAT!
I do think this time apart has grown us closer. He was very helpful with everything. He bought me flowers. He bought me my favorite bottle of wine. It feels so good when he is home. It is bitter sweet to see him go....
it is serving us well in many ways...but it is so hard to let go when things feels really good.
It hurts the heart.
I hate goodbye's....even for a week...I get all teary-eyed.

He will be back next Wednesday...so only one week this time. It has been 3 weeks prior to this last homecoming.

As I mentioned...our little girl turns 6 on Saturday, the 20th. Her party is Friday night...a PJ party. Hailey's 1 request....a pinata....and the Wizard of Oz party at our house. She is so excited!


HUDSON.....

really...where do I begin?

It has been crazy.

I never did call the mito nurse after my last post...but I did call her this last week.
I call the episodes I have been seeing/feeling tremors.
There was so much to tell her though....
besides these weirdo tremor things, Hudson has been throwing up every night for the last week.
There is no rhyme or reason. He doesn't throw up all day. It has been consistently  the last feed of the night.
This is the reason for  no sleep.
I am so paranoid. I stay up until midnight to give him a full 3 hours from his last feed. (I never used to have to do this)
then I feed him with his last 3 meds...B2, Leucovorin, and Lamictal.
Then I lay in bed and watch him on the monitor.  (really not my idea of good reality t.v.)
Usually after 45 minutes or so I feel safe to call it a night...we are talking almost 1 a.m.

My biggest concern is that I fall asleep, don't hear him, and he chokes on his vomit and I awake to something I can't imagine dealing with...
it frightens me...
so I would rather be sleep deprived and know I am awake and ready to help him.
Many nights I am...and I run in his room as he is doing the deed, getting in there in time to lift and turn his head, vent him, change his jammies and bedding. Some nights I think 45 min. is enough time and minutes later I awaken to hearing him gag. There have been several nights I have curtailed the throwing up by venting his tummy as soon as I hear him. (already happened tonight as I was blogging)
He gets all full of saliva and his little tummy and body are doing the heaving motion and then it passes. I thank God for those nights. We have had about 4 nights in a row of just that.
Yet, it is still heartbreaking...to see him go through that...he gets all sweated up and then he passes out after almost throwing up.
Last night I think I sort of figured the mystery to some of this. I put Hudson to bed, then Hunter and then I heard Hudson. I went back in his room and he was having some sort of seizure where his legs were stiff and straightened and he was literally lifting his back and bottom up and off the mattress. When his body relaxed he went into the heaving mode. So this throwing up gig is not so much food related as it is this weird seizure...that I never see during the day....so crazy!

Yesterday I finally decided to try something different.
Typically Huds gets 6 4oz. bottles, which lands his last feed pretty late. I decided to give him 4-5oz. bottles and 1-4oz bottle as his last feed. So he is now getting 5 feeds instead of 6 which is making his last bottle around 9p.m. which is way more do-able for my neurotic behavior of having to watch him.
It worked well for me last night. Although I woke up at 2:30 a.m. to look at him on monitor and hear him breathe, and then at 4:30 a.m. .......my body/mind is just programmed!

I am sooooo sleep deprived.....and it's my own doing really!
Hudson is so good...even when he is awake, he is mostly quiet and just goes in and out of sleep.
Oh, which was my other concern when I spoke to Pam....Hudson typically has always crashed at night very easily......he hasn't been. He is clearly tired but his little body just won't allow him to shut down...it's bizarre. So if you watch him, his eyes are heavy, he looks like he is going to go into a deep sleep and then they pop open.....get heavy again, starts shutting them...pop open. Does this for hours. She says with all the seizure meds it should make him very sleepy, not the opposite. She had me take him up in melatonin, but I haven't seen a change.

Last but not least.......you won't believe this one.....cuz honestly?

I feel like I am loosing my mind....BUT.......

Hudson was on the Augmentin for 20 days...remember?

He has been off for about 15 days now.....and guess what????

The GUNK is back....full force!!!!

He is coughing, I am suctioning, it is GREENISH-YELLOW!!!!!!!!!

It is so unbelieveable to me......this morning when Hudson coughed and sneezed and blew a loogie out his mouth, I wiped it and took the cloth to my mom and asked her the color....what color is this....is this the color of infection or am I going flipping CRAZY?????????

Mom confirmed. She sees what I see. Thick, yellowish-green, pussy mucous. He is coughing a ton again. He sounds horrible.
When I called the pulmonology clinic and told the nurse what I am seeing, she called me later and basically said whatever the infection was should have been taken care of by a 20 day dosing of Augmentin....she made me feel like I am loosing my mind, like I am making it up that Hudson is once again coughing up this crap.
I fear we will wind up back in the hospital, like we did in December, if we don't figure this out.
It needs to get figured out.

It feel as if we had we taken a few steps in the right direction on the antibiotic...
and now we are several steps right back where we were.
I just can't believe what this baby goes through! It is unbelievable....not to mention the endless seizures, vomit, tremors, etc. I am just so tired of the suffering. I just can't imagine how long he has to exist like this. It is not fair for him to go through it. It is not fair, as his mother, to witness this day after day.

I spent all morning yesterday trying to get these tremor on tape, trying to get his strong tonics on tape...nothing! Hudson is so stubborn...wouldn't do it for the camera.
Eventually he did, when the camera was put away.
We have Dr. Saneto on Tuesday. I just want him to see it all, I need to get these recorded, and yet I am so tired of wasting my time doing nothing but staring at my son waiting for the monster to take over....
it is such a weird existence....

In the midst of all this I did turbo tax last week, in between the three kids homework, and making dinner and managing Hudson. I am still working Wednesdays and have just been asked to work an additional 2 Fridays  a month.
I have been a total  looser in the exercise area...because I am just too tired and fried....but have done my Saturdays. So all of you who thought that post a while back was encouraging, and were giving me kuddos....take it all back....cuz I am eating my words...got the big "L" on my forehead!

Another insane week ahead....Dr. Saneto, which is always a big appointment and all day,
Daddy comes home Wednesday, birthday prep all week...I am tired thinking about it!

Oh, I almost forgot....Paul made an offer on a townhome in Las Vegas and our offer was accepted!
So it looks like we will be home owners in Las Vegas very soon! Paul sent me over a ton of pics, and I think he did well. So I think by next month it will be ours! Kinda freaks me out! Life is just way crazy.......

O.k. let me re-phrase...MY life is totally crazy!!!!!!!

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

In attempt to catching a huge tonic, and the "tremors", I had gotten a lot of random video of Hudson, none of which was really what I wanted! BUT thought I would share a little, and show you the "fighter" Hudson proves to be when we make him angry....also known as putting him in the stander for the first time in over 6 months!
You may notice many single spasms, and at the very end of the video I did get a short tremor...see if you can tell what I am talking about.

what's this?

I am getting concerned. This is why I really hate mentioning any seizure improvement...because it never fails to bite me in the...

Last night Hudson vomited at about midnight, and I was worried it may have been illness vs. Mito related. Then it happened again,tonight, not to long ago, but not all day, so I am pretty sure it is seizure related. He was also quietly awake through the night, and awake all day...all unusual behavior. The one thing I feel very lucky about is the fact Hudson sleeps...I have been told kids with Mito are either extremely sleepy or can sleep very little. For Hudson, lack of sleeping hasn't been an issue.
He had 4 tonics today-along with single spasms and after he threw up tonight he had a cluster.

My concern is a new thing...I noticed this a lot today-

It looks like Hudsons head is sort of shaking, but it is very subtle and his eyes sorta wince or squint, he also looks as if he is smiling or maybe it is just the whole face-wincing thing. I can sort of feel this little tremor within his body when I am holding him...what I am describing is pretty subtle movements, but it is concerning me.

Wondering...

*drug related?

*seizure? (Lord help us, NO!)

I really don't feel like I can describe it acurately...just seems odd to me and something is not right. Anyone out there have a clue what it may be?
My description isn't great, I know, but I may call or email Mito nurse.

Filthy...Religious....Broken?

weekend update and my *divine* appointment

I am happy to say our bout with the stomach flu was less than a 24 hour deal.
My poor baby girl had it bad...really bad from about 12p.m. til  7p.m., and then she slept the rest of the night until morning and woke up, back to my happy Hailey.
It amazes me, as I realize how easily a healthy child rebounds. Hailey was weak...couldn't even keep water down through the day, had "D" on top of the pukes (at the same time, blahhh!), and yet a good night sleep after getting it out of her system and she was completely recovered. I can't imagine what toll that would take on Hudson...pretty sure it would land us in the E.R.
Thankfully, my other 2 H's and myself have not gotten it, and for that...I am grateful!

After 24 hours passed...I let them have some snuggle time together while watching t.v....it was killing Hailey to not be around her baby!

The last 2 days have been better seizure wise...I really question even mentioning it, just because *better* never lasts...too long. I am sure I sound like a pessimist...that's just what dealing with this stubborn seizure monster has done to me...not my general outlook though, just my seizure p.o.v.
Today he had 2 tonics...that is drastically less...and no startles or huge clusters. Tomorrow is the last of our increase in Vimpat before we see Dr. S. Would be nice to see the trend continue....we'll see.

My husband has been in a conference all weekend in CA and being it runs until 10:30 at night, I haven't got to talk to him much at all. When we briefly spoke last he had mentioned he would be home next weekend but didn't get any details. I found out tonight that he will be coming home, on the company's dime (huge smile) on Friday and will be staying until Wednesday (really huge smile) because he has hired and needs to train an employee out here! I am thinking this needs to be a surprise for the kids. They know he is coming next weekend, but he will be flying in Friday afternoon, not night! Anyways, really excited.

Our weekend was busy. I had my *girls* night out Fri and played Bunko and actually doubled my $10 as I was the "biggest looser" (anyone who plays knows the lingo!) Always a fun time with about 12 of us...and let me tall ya, these women like to party it up...big time! I couldn't stay out to late, because my mom and Fred had Hunter and Hudson (Hailey was at a sleep-over) and when I used to go Paul was home and the kids could go to bed. Got to my mom's at about 10:30, and both boys were out cold!

Saturday we had a nice day. This was the part of my day that I had my *divine* meeting, which I will get into, but briefly, we went to the YMCA as I had enrolled the kids in swimming lessons and Hailey got ballet, and the classes started this weekend. I thought it would be good to try and fill our Saturday's with something positive and "free" After most of our afternoon there, Hunter had a friend over from school.
Today we went to church, met some other friends at the skate park (the sun had returned) and had family dinner at my mom's. So, all in all, a good weekend.

My *divine appointment*....

I love it when God just shows up...
I love it more, when in that moment, I recognize I am having one of those moments....
super cool.
You see, I have been thinking...
about me lately....
and how I really don't take care of me...
at all....
in so many bad ways....for instance....
since giving birth to Hudson...
I have not been back to the OBGYN...
to, ya know ladies....
get my "annual" (which I did annually, prior to Hudson)
NOT good...I know...but the last thing I want to do is make another doctors apt, and well you get the picture.
I also wonder.....
what lack of sleep, stress, anxiety has done to me on the inside and the outside....
because I feel like the last 2.5 years has aged me....
and my appearance.
After having Hailey, I got really into working out doing step-aerobics and kick boxing.
I actually loved it...was sort of an addiction, and I was pretty dedicated to my work outs...
about 6 days a week.
My workouts today consist of carrying and lifting my so sick, 2 1/2 year old baby boy....
running to his side at the scream of a seizure...
hauling a medical stroller in and out of the car....
not the kind of workout I thought I would be doing after my third baby arrived....
but it is.
So, I have tried here and there...
to get a walk in, or take a class, or park Hudson's stroller next to me at the crowded gym (when he was in the "bucket" infant seat).
We belong to the Y, and this brand new, beautiful facility opened here in Gig Harbor, right before I gave birth to Hudson. When he was about 2 months old I headed back there, excited to get the "baby weight" off and get back in to a routine of classes and working out. Hudson went in to the nursery a few times, because we had not seen seizures, or the face of this disease, and we thought he was healthy.
It was a short, unsuccessful run at the gym, when life would forever change with seizures becoming our new marathon. I haven't been up to the Y much in the last 2.5 years. I envy the moms who mindlessly can throw their kids in child-care, and give themselves an hour...I used to be one of those moms....I miss being that mom....I don't like that I have lost that freedom...it completely sucks actually!

So....my mindset was to get the *kids* up there, get them moving and eating up the day, so what used to be hanging out as a family with Daddy on Saturdays was being replaced by positive activity for the kids. I thought I could walk the track with the stroller, which is better that nothing, right? I will admit, though, I am the kind of person who like to sweat when I work out, I like to work hard if I am going to do it, and walking the track doesn't really excite me, but that is about all I can do when I have a toddler aged kid who is constantly seizing.
So back to my divine moment...
We do the swim lessons, rush to change, get Hailey up to ballet, which happens to be a 45 min. class.
Parents are camped out in front of the room where the class is being held. Me and my bulky stroller and Hunter are too...in the corner of my eye, across from the room and the track, I see an elliptical machine all alone, in a corner that is facing the room Hailey is in, and I take the boys over there and face Hudson towards me, and hop on the machine.
It felt so good.
and no one could see Hudson, or his seizures or  anything...
it was perfect.
As I worked out, Hunter did a few laps around the track. As he came upon me, one of the Y workers came up to him and asked if he wanted to join a family fun class where there was a bunch of activities. He asked me, I said sure and off he went. The class was right next to Hailey's so it worked well.
I got 30 minutes done on the elliptical and then it was time to get Hailey.

Changed her into gym clothes and she joined Hunter.

I sat down and the Y worker who had asked Hunter to join the class told me how sweet Hunter was and asked the ages and names of  my other 2. When she looked at Hudson and asked how old he was, I felt the tug to say he is a sick baby and suffers from a seizure disorder. I explained how it had been a long time since we had spent a day at the Y, how much I missed it and how good it felt to get a 30 min. work out in. I also told her how I used to love taking classes, how life has changed, how I feel uncomfortable having Hudson parked next to me in the cardio areas, because I am certain the last thing other parents want while they are working out is to hear Hudson cry out, seize, etc. and really....it is more stressful for me than anything.

As we talked, she had compassion, and told me my family belonged there just as much as anyone else....she stressed it is a "famliy" YMCA and that we should feel embraced, etc, etc.
She then asked me what I had going on on Tuesdays in the eraly evening, she teaches a step class at 4:30. She told me to bring Hudson and the other 2 and she would set me up in the classroom, and she would love to have us there. I told her that he might cry out if he has a seizure...she didn't care...she told me to come.
She also told me to come on Friday night when she holds a Zumba class (not too sure about this one, I will feel silly) and that Hunter and Hailey could do this as well and Hudson's stroller too! It just so happens that we are up there from 4:30-5:00 for Hudson's pool therapy and the class is at 5:30!
She was sincere, she was totally inviting and encouraging and I knew this was more than just "luck"
but the kicker was when toward the end of our conversation, I for some reason,(reluctant because I didn't want to have to explain mito) mentioned Hudson's seizures actually being a symptom of a disease called Mitochondrial disease, and at that moment she instantly chimed in and said....
"I know mitochondrial disease, a family member of mine has it."

I knew our meeting and the fact that all of this "me" thinking had been brewing in my  mind the last few weeks, I just knew God was intervening in that moment.

I plan to now get some "me" time. No, it's not the way I used to, and not the way the other moms get to....
but I have no excuse to not try and do something that would be really good for me.
I plan to go to the Tuesday class, hopefully the Friday class, and then find my machine in the corner on Saturday. It may not be 6 days a week...but it's a start and it's better than nothing!

And finally...thank you God....for showing up when I least expect it, and giving me the vision to see you working in my life!