Holding Hudson tighter

I have so many friends who pray...
we rely on prayer for strength, to see us through, for hope...
To all my friends out there...
please lift up the Knight family in prayer...
their 4 year old warrior lost his battle with this devastating disease.
The greatest gift, friends and strangers alike, is to pray for this family, that they feel the comfort of God and his people all around them today and in the months to come.

I can't say I was a regular follower, but I did stumble across their blog in the past, as I searched out mito families.
When I read about this heartbreaking news from other families I am linked to, I broke down crying...
for this family
in fear
not so much for this little boy...I do believe he is healed and in the presence of Jesus dancing and singing praises...

It brings me back to the fact that this disease has so many faces...
just by looking at their blog pic you would never know you were looking into the eyes of a catastrophically ill child.
Then there is Hudson, where the catastrophe of his illness is more obvious....
can't talk
can't walk
can't hold his head
can't eat
seizes daily

it is so hard to understand or even grasp why these children have to suffer so much...
for me there are 2 voices that stew in my head...
the one filled with anger, and heartbreak that little children have to suffer, and live a life that no child deserves...children should be full of giggles, joy, exploration, care-free....
the other voice tells me...
these children are here to teach those around them, God has a huge purpose in their early lives, and once they have done their job, they return to a place of glory and unimaginable love and wholeness.

For me, this is how I survive the every day of seeing my child suffer. The lessons he is teaching, the lives he has already touched....God has the time line, he knows tomorrow for each one of us, and there are no guarantees except for this very moment.

The last few day as I stare into Hudson's eyes, I am so grateful it is my arms that are wrapped around his failing body, and I take in how he feels, how he smells, how he sounds....I just can't help but treasure quiet moments with him a bit more.

who do I thank?

I knew this might be an issue...
if Hudson started sounding better...

is it

(A) Augmentin
(B) Claratin
(C) Both

24 hours later and I am definitely hearing less crackling, less coughing, suctioning less.

The doc only gave me a 4 day Rx for Claratin, but I know it is over the counter, so I am wondering if I should get more and continue with it.

I am also wondering if the Claratin could be the culprit of Hudson not sleeping last night.
He woke me at 3:45 and was restless and wide awake....he is still awake!
Not his norm.
Instead of giving him the Claratin at 6p.m. feed ( like I have the last 2 days), I gave it to him this morning to see if it helps with tonights sleep.

I already forewarned my kids if I am super-crabby mom when I pick them up from school it is because of no sleep.

Off to work....my first day back in almost 3 months!

A day in the life of mito boy and mom...

(Our day 9-20-10)

Wake at 6:45 to get siblings off to school

Come home clean up, get ready for 10 a.m. P.T.

10 a.m. PT

11 a.m. feed Hudson in PT parking lot
then off to the Y

Work out for 45 min. with Hudson parked next to me

Run to Costco for gas
run inside Costco for 3 items (one hand pushing Hudson's stroller, one hand pushing Costco cart)
with only 15 min to spare

Run home to get more formula
and slap a sandwich together for the road (for me)

Drive 1 hour to Seattle Children's for Hudson's 2p.m. GI apt.

2p.m....
GI doc happy from GI perspective...nothing changes (except a new button for Hudson)
GI concerned about how H sounds and the fact that 2 weeks of antibiotics has done nothing....nada!!!

GI recommends taking him to Pediatrician to get Augmentin, try allergy med (cuz he sounded so good in Vegas with the dry heat)

3p.m.
Feed Hudson in Children's parking lot before heading back to Gig Harbor

Now an hour + drive home with traffic and a 5 alarm fire off of I-5 in W Seattle

On way home call Pediatrician office. They get us in at close same day.

My mom (now home from vacay...thank God) picks up big H and middle H from After School Care for me by 4

Get to moms by 4:30...say hi to my kids and find out about their day

Leave to go to Pediatrician for a 5p.m. apt.

Pediatrician says the crackling and junk sounds like it is going into his chest
and gives us a Rx for Augmentin, Claratin, and Albuterol...he says Hudson needs treatments to try and break the gunk up so he can breathe better...(mind you...2 weeks he has been sick now!)

wait for Rx's....

go to my mom's....it is now 6:30

she kindly feeds all of us (again, made the day so much better to have my mom here!)

got home at 8:30

prepare 6 syringes of meds and formula

kids get in pj's
put kids to bed
get Hudson in pj's
feed and medicate Hudson
put him to bed

take a shower (cuz I am still in work out clothes and dried sweat from my 11:30a.m. wk out)
blow dry hair...

get into bed and it is now 10 p.m......

aaahhhhh.... what a day!


(thankfully Hunter did much homework over the weekend....I was unable to even go there last night!)


Here is to a quieter day today (home based pt, speech, hope to get to Y, Trader Joes, house work,homework....


Hudson is still sleeping...praying the meds work this time around...
otherwise it will be off to see Dr. Carter in Pulmonary!


in light of mitochondrial awareness week...
PLEASE check out this post from a mito mom I follow

Was never a huge fan...

but I am now...

Jack Black

(I think the video is very cool....quick, informative and to the point!)

I believe next week is Mitochondrial Awareness week...