and....my week takes a 360....

It's amazing how this happens...
with one phone call....
my whole week is flipped upside down!

The caller I.D. read...
Lighthouse...
my kids school...which usually only means one thing...
one of my kiddos is not feeling well!

Oh, my poor Hailey Dee...

I run up there and she is lying on a cot.
The teacher said she had been complaining she was tired all morning...
but the real clue...
Hailey didn't want to eat at snack time...
and it was a rice krispy treat...and Hailey LOVES to eat!!!!

So I took her home.
The minute we get home she is in the bathroom throwing up.
She has been in there alot since we have been home, and not to be gross...but....
both ends...poor girl.
She has tried drinking water...
that is coming up too...

here I thought I was going to be making some great money this week...
and I had to make the call...
because 2 young kids were being dropped off at my house at 2p.m. today
and I was suppose to care for them from 9-5 this week and next...

I make the call to the caregiver who I was replacing for the next few days and she informs me she has been planning to call me because they had to cancel their trip due to personal circumstances!

So now I am loosing that job plus no work tomorrow...

In the last hour we have gone through 4 pairs of pj's and panties!
Hunter is sequestered upstairs (total hypochondriac)  in fear of the dreaded Hailey and stomach flu...

I am now managing barf, diareaha, and seizures......between 2 kids....
now that's a juggling act! (no, I don't want you to feel sorry for me.)

So why do you all need to know this????

Because I need huge prayers lifting Hudson up and out of the realm of possibility of catching what Hailey has...
and you can add Hunter and me in there too!

Oh, thank God I had a good weekend ....my week ahead....

questionable!

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

 I just have to share this...
because our pastor speaks a good hour when he preaches...
which is awesome...
but now you can get higlights or snippets (they are 8 min. or less!) from his sermons...
which are waaay shorter...and I know many of us don't have an hour
to sit at the computer and listen to a sermon.
I am fortunate...I go to Mars Hill....I get the whole hour :)
This was from this last Sunday...
and I just need to share...because it is always good stuff...

Great weekend....in spite of the *usual*

Finally...some fun......

we had a very busy weekend....
the greatest thing ever...
was seeing the sun shining the entire weekend......
which gave us some pretty mild afternoons!

We had started feeling like hermits......
and it doesn't help when the rain pounds...
the kids are bored...
the husband is gone...
and constant doctors appointments!
That is called NO FUN!

So ......
Saturday morning when I told the kids we were going to get in the sunshine and go to Seattle....
their response from both was the same, and sorta sad....

"ahhhh.....mom, why do we have to go to Children's again?!?!?!"

yeah..they equate Seattle and hospital all in one equation......

so how could going to Seattle possibly be fun????

Pike Place Market!!!! 

The kids loved it!

We had a van-load...

my crew, along with my mom, Katlelyn and Fred.

The place was packed, but I guess with the Olympics being so close many are coming through Seattle.

So you had the tourisits, and locals....and like I said the weather has been amazing....

and for "Seattle-ites" this calls for shorts, flip-flops...not me...just the crazies who think the sun = summer....

the grey skies makes us a little coo-key out here!!!!

So we walked around and got some goodies.....

Hailey was scared of the crabs in the tank that you couldn't see in this pic

Fred got the kids strawberry lemonades, chicken skewers, sausage skewers, pickles

and that was just a "snack!"

 

Anyone that knows Hunter, knows he is not a *cake* kinda kid but....

a **cheesecake** kinda kid, so.....

they have a new hot-spot that Hunter would not let me leave without purchase..

that case they are standing in front of was loaded with all different types of individual mini cheesecakes..

I wish I took a pic before we ate them that night...they were quite amazing, but...

I said "mini" little round babies, at $4 a pop...and we got a 4-pack....

maybe if you click the pic you can see how mini...

but it put a super huge smile on my boys face..

and that is priceless!!!!!

After the market we walked down to the waterfront...

 

and we set up camp at Steamers for a late lunch.....

My kind of Saturday!

and the kids commented on the way home

(well Hunter commented and Hailey gave him an amen!)

"I didn't think going to Seattle was going to be a fun day mom,

but that was a great, fun day!"

Sunday my mom took Hudson for me so I could take the kids to church.

The kids and I serve every other Sunday as greeters, so we had an early start.

I had plans carved out for Sunday way ahead of time, with a friend and her 2 kids.

(Her husband is a pilot so it works well for our husband-less weekends)

I had planned to have her son over for a playdate and then her and her daughter would come over

after nap time and we would do dinner at my house. Thought it would be a nice relaxing evening.

Boy was I wrong...

through church I noticed my cell phone kept going off, on vibrate thankfully, but it was my mom...

and she was relentlessly trying to get a hold of me.

At first I though it might be a "Hudson" issue, but figured I would get a text most likely too....

and I didn't. So felt comfortable waiting until church was over to find out what was going on.

Called my mom and found out my Aunt and Uncle, from Portland, had been in town and were stopping in for dinner on their way back to Portland....AND... my brother's flight got cancelled (pilot) due to a snow storm in Reno and he was being re-routed through Seattle....so now my quiet dinner with my girlfriend and kids became a family gathering unplanned...at my house!!! 

It was all good...kids were thrilled with friends over...

and our suprise family dinner!

(no, I don't completely stink at taking pics, nobody would scootch in and I gave up!)

Marylynn was a sport hanging with my crazy family. 

(I know she thinks we are crazy, but that's how we roll!)

Anyways, she has been a great support with Hudson and she has been the one who got me my job at the church, and my brother has officially labeled her as my "pimp" because she just got me another temp job that was too good to pass up...so I will be working hard this week and next! :)

She also has a daughter that is about 4 months older than Hudson. We have talked, she knows, how hard it used to be for me to even be around her beautiful baby. That's just it though, it was when she was a baby it killed me, to see her so vibrant, doing what Hudson should be doing.

Today, oddly, it is not nearly as painful......

She seems so "big"

and to me Hudson is still a baby.....

and yet they are only 4 months apart...mind blowing really.

I guess when I think about it..

it saddens me...

because I see the joy Hailey has in this little girl...

and I see all that Hudson isn't doing...

and I see seizures

while all the kids run around and play.

So although it saddens me

it just doesn't seem like age is even relatable anymore, at this point....

because Hudson is still a baby....

and she is a big girl.

It was a sweet yet strange moment.....

Hudson has a cry-out seizure

Alexa walks over and asks whats wrong?

and I explain he has an owie that hurts real bad and we can't get rid of it...

and she just looked and watched him...so sadly

and sympathetically.

Marlylynn and I had envisioned our little ones doing pre-school together, like our boys did, 

and being good friends.....and instead ....here, last night..... her daughter watches him seize....

definitely not what we envisioned.

Enough sadness....because it was a great weekend...and I have gotten to a place where I actually don't avoid my friend who has a healthy 3 year old (in the baby days I sorta did)...her friendship and love mean way more than that, and I am grateful Alexa is healthy and they don't know this pain I know.

I would just rather be a part of that club, not the one I am in. 

And that is just me.... being totally honest.

We will be starting the drug to cut down secretions. 

Hoping it helps...he was very drooly today, which is not the norm for him.

He has also been having a very hard tonic seizure that ends up in a cluster of spasms which makes his breathing and tongue do weird things and I have noticed this certain seizure combo results in Hudson throwing-up...I think it is totally seizure related as he doesn't throw up all day except after this one type of seizure. So that was in my bed this morning and also happened Sat. and Sun morning....sort of a random thing.

Because of my temp job our Dr. Saneto (nuero) apt. was pushed out 2 weeks further in March as opposed to next Tuesday, which I think will work better because he will then be on the full titrate of Vimpat.

 After Sunday's seizure, throwing up and bath.

:(

I HATE SEIZURES....just had to get that off my chest...HATE 'EM!!!!

leaving you all with some random pics from last week..........

My cute little "St. Valentine" in his lead part!

Hunter asked his Nanna to be the "Royal Reader" for his celebrated 1/2 birthday at school.

(He has as summer b-day)

Pulmonary and sushi

Another long day yesterday.
Any day, for me, ending in sushi at Blue C....well that's a good ending to a crappy day!

My day progressively got worse on Tuesday.
We all know how it started...well those who continued reading my wining do.

Once I got to Children's, got Hunter and Hailey in the sibling room, the ball started rolling with our pulmonary appointment.
Honestly, wasn't feeling all that great about the appointment.
The doctor was nice. We reviewed Hudson, the history, symptoms, answered the usual questions.

Dr. Carter was mainly concerned with the chest x-ray. Which, in a way, took me by surprise...because the blood work came back o.k......but it didn't seem like it was enough for the doc.
He basically said before we could tackle the problem at hand we need to rule out the main concern...are we dealing with a bad infection, or something else? And when I say "something else" I am pretty sure those were his exact words. He never put any "label" on what we might be dealing with, other than something else and if so, that will be a whole other issue to tackle.... I knew he knew, just didn't want to say it.

We talked about secretions, swallowing, coughing, sleeping...I will touch on those more in a bit.

He sent us to radiology to have yet another chest x-ray...to see if there were any changes. Instantly I told him that I couldn't sit at home and wait for results...I needed him to read and inform of what the x-ray was now showing. He agreed, although he informed me he would only be in clinic until 3 and would have to have someone else read and interpret it for me.
That was fine with me...just wasn't leaving the hospital with the unknown playing games in my mind...couldn't handle it.
It took about 45 minutes before we got in to do the x-ray. I was getting impatient. The x-ray took a whole 15 minutes, I am guessing. By this point my 2 hour max was up for the sibling room...in fact we were well over the 2 hour mark, and I had to pick up Hunter and Hailey and bring them back up with me to the clinic.

My dramatic Hunter thought I was never coming back for them...and was wondering where I had been.Hailey was to concerned with where all her art work was to even notice or care that I was standing there.
With 2 tired and whiny kids, I dragged them with me, met my mom, and we went to pulmonary,
By this hour it was like ghost town there...no one was around...and when we inquired about getting the results, nobody knew anything.
We ended up waiting about an hour, and then my mom couldn't take it anymore...she searched the clinic for someone to help us.
Finally a doctor came in. He was sort of wishy-washy...didn't really know the history of Hudson, so it was a little uneasy. Bottom line...he felt like the x-ray showed improvement. He mentioned the lymph node that was swollen looked like it had shrunk...but then he mentioned this may not have been a lymph node at all! Then he also mentioned the possibility of tuberculosis .....but he sent us away assuring us the x-ray improved and there was nothing to worry about, and this was not a case of tuberculosis.
All of this between the hours of 1:30 and 5:30...that is when we finally left Children's!

Hungry, tired...but happy...my mom took all of us for sushi!
That was a serious dinner bill...my kids are serious sushi eaters..well Hunter is. He eats the raw stuff. Hailey is a crack up...california rolls..plates of them, mind you...bowl of rice, chicken terriyaki, 2 plates of Edaname beans... she was rolling out of the joint. Me...I am all about the sushi...I could live on it...my favorite!
So, a cruddy day, ended in a glorious sushi feast!

When I got home there was a message from Dr. Carter....which impressed me....because I felt like our time was somewhat abruptly ended. The fact that he called and followed through with us...was impressive.
He said he looked at the x-ray, wanted to make sure I got the correct interpretation, and said he saw a nice improvement over the last week. He said he would call me and talk further Wednesday evening (tonight), which he did, and we discussed things further.

He said the enlarged lymph node had shrunk, if it was...he used the "C" word...CANCER...it would not have shrunk with a round of antibiotics. That was the first time cancer was actually stated to me as the main concern. (other than the lymphoma mentioned the first time)
I guess it is easier to say if it is ruled out. He said since we now know for sure this in not cancer, and just a bad infection, we can move on to the chronic cough, congestion.

Obviously a big part, is the fact he has a bad infection, which he prescribed an additional 10 days of antibiotics, after the first 10 days.
He mentioned his lungs are clear and getting good air, so this disease thus far has not affected his lungs.
He mentioned Hudson has a strong cough and that he feels Hudson is aware when he swallows and his secretions go down the wrong airway, resulting in a cough, which is appropriate...that is what we do if we swallow wrong. So he says it is good Hudson is aware of this and he has this strong cough because it is keeping those secretions from seeping down into his lungs..a good thing.
Hudson's rattly, ghunky sound mainly comes from the upper chest/airways. The doc feels his swallow has weakend over the last 6 months, and many things play into this....seizures, meds, sickness....so if any of these changes or improves, his swallow could improve, but as things have gotten worse his swallow has gotten worse.
The stinky part is...there is really nothing you can do for the swallow. I am sure if Hudson didn't seize or wasn't on a full stock pharmacy load of drugs...things could change for the better...but we are dealing with endless seizures, the most anti-epileptic drugs taken at one time, and compounding viruses....
of course things are going to go down hill!

The doc informed me he emailed Dr.S (neuro/mito) and would like to try Robinole (sp?) a drug that dries out the secretions, so Hudson wouldn't have to cope with so much and hopefully it would decrease the coughing, which would help with expending all his energy in coughing and secretions. The flip side is that it can make the secretions seem too thick and cause more problems in return.
We agreed if we get the thumbs up from Dr. S, we will start Hudson at a very low dose and see how it affects him. If things improve, we can always increase.

I asked about oral feeds. He definitely sounds better, not perfect, but much better, and my thoughts were to feed him with baby food again if he continues on the upswing.
His thoughts were no oral feeds...lets wait until we are done with the 2nd round of anti-biotics , see how he sounds, get a base line, then talk about oral feeds. Makes sense to me.

Another emotionally exhausting week. Seriously I am fried!!!!

A highlight...

My oldest, Hunter, was performing with his class in a skit for school chapel today, and he had the lead part....he played St. Valentine! This morning he told me he was nervous, his knees were shaking (his words), he was worried he may forget his cue when it was his turn to speak. He didn't have school Monday or Tuesday and chapel is first thing Wednesday mornings...so I could totally understand why he was uneasy.
He did absolutely fabulous...acted out his parts as it was narrated, remembered his lines....super cute and I was a super proud mamma!!! He is really blossoming!

Hudson even did well....it crossed my mind...because timing is never all that good when it comes to stuff like this....
I envisioned Hudson going into a scream/cry-out tonic seizure as Hunter was delivering his lines... and the all the rows of school kids in front of us and parents turning our way to see the seizing brother of Hunter's.....
thank God it didn't happen...
I got the whole thing taped, seizure free....
 Hudson saved the cry-out seizure for the moment we reached the car in the school parking lot...

On the seizure front...bad...have seen no change as of yet, just BAD!
This evoked me to email Shawna (Cody's mom) and find out how long it took to see a change for the better. She said a few weeks but their seizure free streak was over and Cody had been having 3-5 minute seizures as of recently...gggrrrrr....

My 2 main gripes....SEIZURES and the CRONIC COUGH.....
but if I had to choose with only one wish....
it would be a no-brainer.....
to say goodbye to the seizure monster once and for all!!!!!!!

Thanks for continued prayers and encouragement.

will we ever catch a break?

I wonder....
it seems like there is always something...
and I am not looking for huge breaks at this point...
just little ones...and those even seem impossible.

If you don't care to hear me whine...
feel free  to stop reading...
move on.

The kids have no school today (Tuesday) or yesterday.
Monday mornings Hudson has PT, which I got all 3 kids out the door and we went to Hudson's therapy.
This morning I just wanted to sleep in...
sleeping in for me means not having to get up, not having to rush, not having to contend with anything before 8:30ish.....seems like it would be possible...not unreasonable to look forward to a morning like that....right?

So why is it....
at 6:45 a.m. I hear the crib moving...I turn on the monitor and Hudson is having jack-knife-to-the-side spasms all clustered up one after another.
why is it...
at 7:30 the dog decides to bark...she is almost 13...she has *different* barks...this was the "I have to go outside potty" bark,  rarely does she do this...she doesn't typically have accidents...but she is almost 13!
why is it...
after I get back into bed after letting the dog out, getting reflux med in Hudson, going back downstairs to let the dog in...because now she is doing the "I am an inside dog, let me in the house now!" bark...
my phone rings
why is it....
I go to feed Hudson, now 8:30, and as I am feeding him he wakes and goes into a huge tonic seizure...
then throws up the feed.
and I just washed and changed the crib linens yesterday after he threw up the night before and was saturated.
why is it...
Hudson is throwing up when he shouldn't be able to...remember we just got word his Nissin is in tact...I can only think it is seizure related.
why is it...
I find myself stripping his crib once again, stripping Hudson and running a bath, and my 5 year old says "Mommy, can I have a bath too?"
and I say...
"Hailey...mommy has had NO coffee, can I just have some coffee first, before running a bath for you too?"
and Hailey says...
"I know how you feel mommy...I have had no food or drink either, so pleeease give me a bath?"
and I say..
"O.k., let me get Hudson dressed and in my bed (at this point he is falling asleep in the tub from his seizure-riddled morning) and I will give you a bath a too. (in my mind....i just need caffeine!!!)
why is it...
Hudson has the "shakes" after the hard tonic seizures...I have seen this happen a few times before...it is as if he is shivering cold.
why is it...
the one morning I was looking for some R&R, it is the furthest thing from restful.

At 9:30...
I got my caffeine...but then I got a phone call..and my coffee turned cold...and now I am past even wanting a cup of coffee.

I don't want my day to be painted this way...
we have the Pulmonary apt. at 1:30...
will things turn around...
sometimes it seems impossible...

to catch a break.