Together for Thanksgiving

I am certain Hudson was blanketed in prayer this Thanksgiving.
He looked so horrible, and I really thought as the day progressed that we would be heading to Children's.
The most puzzling thing about mitochondrial disease is that you don't know what is going on internally.
I can only judge how he is doing by the outside...I have no clue what a simple cold is doing to him and his system. After his last hospitalization I realized he can have no fever, have common cold symptoms, and internally his body can easily be failing him. Only through a blood test did we find out he needed a intravenous drip to replenish his body and fight the infection within. With this knowledge, I would rather be safe than sorry, and just take him to the E.R.....I just can't be too careful.
Thankfully, (in lieu of Thanksgiving) he slept really solid Thanksgiving night and woke looking much better, and coughing less.
Hailey was also not well on Thanksgiving and ended up on the couch most of the night and through dinner.

A little Thanksgiving cheer!

Hailey and little Brucie

Fred's dog

My mom the hostess and Fred

Our Thanksgiving dinner

Paul managed to fly home last week in the thick of the storm. Tomorrow he heads back to Vegas.
We have had almost a week together which has been nice.

a snowball fight

Today we will try and get the tree up, and the outside lights up. This will be the first "holiday season" apart.
We have so many traditions as a family...already some of them will seem difficult to uphold...at least with all of us together anyways. Next Sunday the kids have their school Christmas Concert...Paul has his company Christmas party...already a conflict...I may try and fly out to be there for the party, but then would have to fly home very early Sunday morning to get home for the kids. Obviously Paul will be missing their performances :( A part of me is really not in the "spirit" of things this year. I typically love the holidays...this year  seems to be more overwhelming than joyful...I hope that feeling changes for me.

For now I will remain grateful for each day we are home with Hudson, and if we don't see the hospital in the month of December, that will be the greatest gift of all!

why today?

Hudson is having a terrible day...
it started late afternoon yesterday with a cough...
it was a dry cough, but he was coughing a lot.
Last night at 12:30 a.m. he woke up crying and coughing, and choking.
I gave him some advil, and albuterol and tried to suction him.
It helped and he was quiet the rest of the night but I  am not sure how much he actually slept.
I was up through the night just to listen to him breathe...
then this morning at 5:30 he started coughing and crying. I brought him into my bed and he slept pretty sound until this afternoon.
He is up now but very, very lethargic. Clearly his body is fighting something.
This is when the face of mito really appears...
he is so limp, tired, his breathing is labored...
seizures are yuck....
If you have a moment in your day, could you lift Hudson in prayer?
I just don't want Thanksgiving spent with our family split in 2 (hospital/home)
but obviously we will do what is best for Hudson.

Blessings to all of you and your families this Thanksgiving.

it takes SNOW to get caught up.....

Hunter, Hailey, and friend/neighbor

I don't ever remember snow falling this early in the Seattle area.
This has been quite an interesting day...
I had to get the kids early from school and what is a 5 minute drive from school to my house took 30min...
So I am staying put...
which is why I finally downloaded pictures and am posting...
I have the time...I am stuck at home!
(so sad it takes snow to slow me down!)

So if you are wondering if we ever celebrated Halloween...
we did...
but the pics just got downloaded, so here we go...
last months pics...

Hailey at the local pumpkin patch

Poor Hudson...I torture him every year with the guts!

Zack and Cody (kinda went wrong!)

All ready for our Halloween gathering

Hudson working with his teachers

My cute little cub scout

Halloween in the Harbor

update?

I always know I have neglected my blog when my own mother and friends who I see/talk to on a regular basis start wondering why I haven't posted...
It is funny how I use my blog...sometimes for my own therapeutic reasons (which is when I blog often), other times it feels like a chore....
and honestly...
when life doesn't change much with all relating to Hudson, whats there to blog about?
It is really just the same old story....my head just may be in a different place.

All things Hudson....

Monday it will have been 2 weeks we increased his Lamotrigine. Have I seen a change? Nope.
He is still having the hard, what I think are tonic seizures. Some days are better than others. Maybe 2.
Other days it is 2 in one hour. Then all the single, quick little spasms he has...the untrained eye would never notice. As always, I am thankful I am still not seeing clusters....HATE clusters. He is still not vomiting. (do I dare say it has been almost 5 months?)
His stander has been ordered. We are still trying to pick out the right chair for him.
The cool device I showed in my last post will be in our home after the holidays.
We just don't have room for it with all things Christmas.
I will be one happy mom if Hudson remains out of the hospital the rest of the year. We have many planned events in Dec. and last year we were in the hospital right before Christmas, don't want a repeat on that!
Dec. 10th we go to see mito/neuro....it has been 6 months!

Hunter and Hailey...

they are doing great....really proud of them as conferences were last week. They both make me beam!
A little conflict has come up as I was planning to fly out to Vegas for Paul's annual Christmas Party which is on the 4th of Dec. Found out last week the kids school Christmas concert is going to be on the 5th! In the past it has always been on a weekday, why a Sunday??? Just blows....could really use that time alone with Paul and I don't think it will happen. Me missing the company party would not be as hard as me missing the school concert...the kids and teachers work so hard to prepare for this.
Thanks to a good friend of mine, Hunter started cub scouts last month, and absolutely loves it!
My friend was kind enough to do ALL the leg work for me and get him in her sons group...
it has been such a fun, positive experience for him. It also gives Hunter time with her son on a regular basis as they don't go to the same school...really fun for all of us!
Hailey is doing Tae Kwon Do at the YMCA on Saturdays and loves it....so we will head there this afternoon.
I try and get a work out in while she is kicking and punching.

As for me....

Busy, busy...

with work...Tues, Wed, Fri...I really enjoy it and am so grateful God placed this opportunity in my path...it has been a perfect fit!

with all the kids school stuff and after school stuff

bible study on Thurs....working in the classrooms....

therapists daily

trying to fit in some socializing with friends and family so it is not all kids all the time...

most of the time it is combining the two...
like last night...
Hunter had a birthday/sleepover, but I still had Hudson and Hailey.
I went to a friend house (her kids are much younger than mine) for a girls night....only 4 of us...
but she knows my situation and was kind enough to let the kids come with me...
I don't have the luxury of leaving them with Dad like I used to....they were great though, and we had fun.

So there's my update...

I may shock some of you and try and do another by Thanksgiving! :)