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! :)

time flies...

Time really gets away from me lately...

single parenting my three kids makes my days fly by...

all the school work, all of Hudson's needs/therapists, working, carving time for friends and playdates...

there is certainly no time for me but that is o.k.

My "adult" time consists of talking with my kids friends moms after school while they play on the playground on our token, sunny, glorious fall days.  Last week we even had an improptu 3 family gathering for dinner at one of Hunter's friends house...I actually got to just sit and talk with my friends while the kids ran wild. The hard part was not having Paul there...the dad's are a bunch of really nice guys and I know he would have enjoyed it.

Hard to be the "single" one sometimes. Hopefully he will be there next time. We talked about doing a winter weekend trip to the mountains and sharing a place...would be fun for the kids for sure....not sure Hudson could handle it though and I would only go if Paul could go. Oh well....

Good news is he comes home tonight for the weekend.

Yesterday Hunter got his head checked at Children"s. Pathology report was exactly what they thought it was, I wasn't too worried though as they said they would call if it was something alarming.

All 3 kids got their flu shots and we even ran into another mito family (Heidi and Jack) who had just got their shots as we were coming to get ours! Funny how that works!

So this is the levels and ranges for the meds...

Lamictal – 7.4 – (3-14)

Zonisamide – 39.9 – (15-30)

Valproic Acid – 54.7 – (50-100)

 They had me increase the Lamictal by 5mg (10 mg more a day)

As always, we wait 2 weeks and see what it does...won't hold my breath, but will pray and pray for a change for the better.

Hudson might get this super cool piece of equipment. He had a test run on Monday at the P.T. Clinic and his P.T. said he will probably give it to us to use in the home. Apparently some dad made it for his kids years ago, and gave it our P.T. when his kids grew out of it. 

It is basically like a stationary motorized bike. It has a remote control to where you can set levels of resistance as if he was climbing a hill, and you can change the direction and even pedal backwards!

I was very excited for Hudson...

just not sure where I will put it! We are seriously running out of space for all his stuff...

wish I had a therapy room for all of this stuff.

I think this will be great for his muscles.

I think just about every therapist has asked me this question...

"does Hudson respond or show any interest in any toy?"

Clearly....NO! They try toy after toy...nothing floats his boat...9/10 times he won't even look at whatever they have dangling in his face.  The only thing he likes is a cozy set of arms and he purrs like a kitty. 

I don't know why he shows no interest in anything...I think his seizure saturated brain just can't go there...

he exists in this world of seizure and recovery....can you imagine? This is why I treasure him, his spirit, his fight, his will to keep going and giving so much to all around him...he is such a love...such an angel...and he is all mine!

Life for Hudson doesn't change much day to day....no progress has really been made in the last 3 years....my expectations have become so realistic....how could they not? I just treasure him each and every day and look at him with so much admiration, and pray God would have a miracle in store for him.

Please keep Hudson in prayer as always, in regards to med increase. 

Would love to see a glimmer in his beautiful brown eyes.

the numbers are in...

but still no real info.

Anyone know what these numbers mean as far as therapeutic levels?

Hi, Debbie,

Seems like it took forever to get results back, but they are:

Lamictal – 7.4

Zonisamide – 39

Valproic Acid – 54.7

Russ is on service this week, so as soon as I can see the whites of his eyes, I’ll get some direction from him!

 Doesn't sound like I will be getting any direction any time soon, but I am hoping changes are on the horizon with his meds...so sick of seizures!

 

I have to give a shout out to Dawson and family 

they have been battling the seizure monster for years and all praises to God his seizures have stopped and better yet he has a normal EEG! They have been steadfast in prayer and faith and God is using Dawson in miraculous ways....I think the most amazing part of all is this little boy has been on the path of facing radical brain surgery to stop these monsters....check out his story for a glimmer of hope and inspiration. 

finally...sharing a piece of good news (mixed with some junk)

I am THRILLED to say Hudson was approved through the school district to get a brand new chair and stander purchased for him....JUST FOR HIM, WITH ALL HIS NEEDS!!!!!

This is big..the super new, super cool stander is over 3 grand! I don't get excited over standers...vacations, clothes, house decor...standers???? well at 3 grand lets just say it physically would be impossible to come out of our pocket....so this is right up there with the exciting things in life!
I am not sure what chair we will get, but I was told they know we have looked and tried everything they have in storage and NOTHING is cutting it. He just has too many needs! So when I found out yesterday a chair was approved along with the stander I was thrilled.
The only glitch is that is will belong to the school district, not us, and if any damage occurs in our home, we are responsible....I am good with all that, and will make it crystal clear to Hunter and Hailey and all their friends that come over....hands off!!! You'd be amazed at the ideas they come up with all of Hudson's equipment.

Last week we got Hudson's blood drawn for med levels. I am a bit irritated. It has been a week, and I have heard nothing and I am certain they have the results. I even called mito-RN last Friday to let her know mission accomplished. The Valproic came back much lower than last time.The rest was still out. He has grown and I am sure we need to make some adjustments, and as I watch his seizures ramp up and gain strength, I feel highly irritated that there is no sense of urgency to help my little guy. So I sent off an email today....I certainly won't let anyone forget about my H when it comes to getting him help...I will hound 'em!!!!!

Another small annoyance....
Hudson has been up again at night. Quiet...but up...and we know I hate sleeping knowing he is not.
He also has been pooping some time in the middle of the night, because lately he wakes up with a stinker, and a mess...and believe it or not he sleeps like that...uugghhh! Then he ends up sleeping half the day away too.
Sometimes I really do think these meds need to be "up'd" ....he used to knock out within an hour of getting his last feed, 4 seizure meds and melatonin....none of it has been putting him out the last few months!?!?!
He gets Valproic Acid, Depakote, Vimpat, and Zonegram all at one time all before bed. (besides other vitamins and such)

So some really great news for Hudson, and praying for some news by weeks end regarding blood/meds.

it's been 14 years....

celebrating 14 years of marriage today, and 18 years being together....

It says a lot in itself that we are still together....
really no couple should have to endure all we have/are going through...
a sick child is enough on its own...

in spite of our struggles and life's huge curve balls that we never saw coming...

we are here...together....in spite of it all!

(praying God has great big plans for our family/marriage this next year...we deserve a break!)