STRESSED from nevada....

I would really love to do a "happy" post because I am certain I must sound like a whiner, complainer,
poor-pity-me-er....maybe soon I hope....not this morning...

I am posting from Nevada...in the apartment my husband is due to move out of by months end.
I have a king-kong headache that began several days ago when trying to figure out when to come down here...
there is nothing easy about making 5 days worth of medicine for Hudson....
what's worse is running out of medicine syringes and praying my mom can concoct the rest, because...
at 11p.m. the night before my 7 a.m. flight...I searched my car, old purses, laundry room, junk drawers, computer desk, kids rooms, bathrooms, diaper bags....
looking for med syringes while tears streamed down my face....
the stress of that alone nearly killed me.
I think Hunter thought I was on the verge of the point of no return...I have never felt more panicked!

My mom has no choice to suck up the meds I couldn't as she uses them....it stressed her out as I have always had it all prepared. I am grateful she is comfortable and knows how to feed him by G-tube...I don't expect anyone, including mom, to do what I do...it has taken me 2.5 years to be the nurse I am today!

So....

Obviously I am here. Vegas. Things so far are good at home. A plus.
I should have slept like a rock...but I didn't and I was awake at the crack o dawn! I can't unwind...in fact I feel like I am wound up so tight I may burst like a balloon!

I had to get up yesterday at 3a.m. and take a 4a.m. shuttle to the airport. Once here, Paul had to go back to work. We were told yesterday the loan was approved but there were a few *conditions* and so the stress continues...
coming up with documents that are at home and we gave before, but now they tell us certain pages aren't clear in faxes from last week! Explanations which lead to having the underwriter take another look...

We have savings, we have money...but we have to put a chunk of money down since this is a 2nd home...the money has to come from somewhere, right? So if we use the savings we have to go towards the 2nd it sorta brings those numbers down and they like to see the "cushion" remain a "cushion".

bottom line...

we could hear today this loan won't go through...it's possible.
Because of the recession and all of the foreclosures nationwide, there are very strict guidelines in home loans...like never before...
it doesn't help that Nevada has the most foreclosures in the country! Yep, heard it on CNN yesterday!

Anyways....saw the townhome yesterday...it is perfect for a 2nd getaway...just might not be our 2nd getaway...only time will tell....we'll see.

Another thing I must give to God....
if it is meant to be ....it will be.

Paul and I have talked...
if it doesn't happen, he will likely come home...
giving up his dream job...did I mention he loves what he is doing? Maybe not where he is doing it, but he loves his new venture. Which is tough.

We both know we are not in control. If this venture continues as it has been...we will get the house...and if this season of living in 2 places is over...we will shut that door and get ready to open a new door...as we wait and see what God has in store for the Austin Family.

I have just been praying for God to reveal what is best for our family...that whatever happens, we will be o.k. and we will accept it as that.

I do want to say I appreciate all of the feedback I got from my previous post. I am glad most of you don't think I am too raw...or being insensative...I always want to keep it real, ya know?

Not here to paint a picture that doesn't portray truth. This blog is like a diary. It is easy to forget there are many reading the diary. For all who endure what we parents of sick and SN kids endure...our blogs need to be an outlet, a source of emotional release...virtual screaming, fist-pounding, laying down and throwing a tantrum...
 as well as our shouts of joy, accomplishments, goals reached and virtual high 5's....

and if I am too much....as one blog- friend said...you can just hit that x in the corner. 

For the rest of my time here in stressed out Nevada...

I figure we should know today which direction our future is headed.
I look forward to spending some time with my husband and hope that whatever happens, it doesn't ruin the time we have today and tomorrow. I plan to go home Sunday.
For my prayer team out there, could you pray for acceptance on however things go today and tomorrow...pray for what is best for our family, whatever that may look like. Thank you.

****

I want to share  this video that was made by a mito mom/friend...Thank you Jen for taking the time to do this for all of our babies...it is beautiful and touching...she included my living angel in the video. Her beautiful Isabella,is in the arms of Jesus, but Jen continues to advocate awareness on behalf of Bella and all of those suffering from this disease.
Again...HUGE thanks and Hugs to Jen...

Make an on-line slide show at www.OneTrueMedia.com

Sorry...

sometimes I get on here and it becomes a tablet of releasing my minds thoughts to words written.
Sometimes I don't realize my thoughts can actually affect others...
because I forget there are other mito moms reading my thoughts and fighting the same battle...
the last thing you want to hear about is my depressing acceptance, right?

I sorta always get in a funk when I get the clinic notes.
New terminology is never a good thing in this medical lives of ours. I just noticed I reacted a little differently yesterday when  I got the notes.
I feel like I am not looking for the *answer* anymore.
I feel like I have accepted the *answer*

By that I mean...
My son has mitochondrial disease.
A disease for which there is no cure for.
A disease that has caused horrific seizures that have affected his ability to develop and learn.
A disease that boggles my mind cuz I have no clue how this happened to him.
A disease that is degenerative
A disease that needs so much research given to give our kids a chance
.
So I accept the fact that a cure, or breakthrough in seizures, or development...is completely out of my hands.

I am doing the very best for him...
by staying in Seattle and keeping him with one of the top mito/neurology docs in the country.
by loving on him and cherishing him daily.

I will never stop fighting with him and for him.
I will never give up hope.
I will never stop praying for a miracle.

So, I am so sorry...

for those who have a mito kid...
and those who have lost a mito kid...

my words are not meant to bring you down, or raise me up...
I am here just sorting my emotions daily...
because when I look in the eyes of my baby boy...
he is perfect...and precious...and a *living* angel...and I adore him so.

I know you can never really prepare your heart for what mito is or what challenges it may bring...


I am certainly not in control...God is...and that makes me feel so much better...

I always learn something new...

when I get the clinic notes in the mail.

In the past, I would read Dr. S clinic notes and run to the email to ask a bunch of questions.
Seems these days I read and learn of something new he has with some medical term that is used,
 but nothing really surprises me, or raises to many questions anymore.
I guess I am sort of at this place of unless a miracle is coming our way,
or a breakthrough in mito research or medicine...like a cure...
I am just trying to manage this gawd-awful disease the best I can.

I guess I have come to terms that this disease will likely take Hudson very early in life....

not an easy statement to make...but...I can't live trying to fool myself or anyone else...
Hudson is seriously impacted by this awful disease and it has taken me a long time to be realistic, and be honest with myself and those around me.

Doesn't mean I won't fight like mad to keep him here, give him the best, and pray for the miracle that I  know can happen... beacause I believe in miracles.
I also know this time I have with him now is priceless and I wonder if these realizations isn't God's way of preparing my heart for the future...

I am so grateful today...

he is not hooked up to any tubes
he breathes on his own
I can take him places...like the park and throw him on a slide with brother and sister.

I know my time with him is such a gift.....
like yesterday in that picture holding him...
I want to freeze those moments in time...
the sun was beating on us, Hudson was calm and his body was at peace...
I don't ever want to forget how those moments feel with him...
because I spend far too many moments in his day trying to calm a seizing, scared, trembling Hudson.

So on to our clinic notes that have some new terminology for me....

"Hudson comes to clinic today with his mother. He continues to have seizure clusters of approximately 2-5 per day. Within the cluster, he will often have  tonic spasms as well as quick myoclonic jerks or spasms. Spasms are short, lasting less than a second. However clusters can last 5-10 minutes.

NEUROLOGICAL EXAM:

"Hudson was not interactive with the exam. There are frequent events of myoclonus within some Choreoathetotic movements (this involuntary movement seemed less than when I visited him in the hospital)
He does not blink to confrontation or light.Otherwise, cranial nerves II-XIII are intact. On motor examination, there is normal muscle bulk with an axial hyptonia.He moves all extremities spontaneously and symmetrically, although spontaneous movement is less than expected a child his age.
On deep tendon reflex testing, the upper and lower extremities were 1/4. The plantar response was mute bilaterally.

NON NUEROLOGICAL EXAM

".........there is no limb edema. The neck is supple and full range of motion was noted. Skin is dry and intact without rashes or legions. There is no lymphadenopathy. There are no facial features suggestive of a distinct dysmorphology .There continues to be plagiocephaly of the skull."

ASSESSMENT AND PLAN

" In summary Hudson is a delightful 2 year old young boy with a history of mitochondrial cytopathy.
Hudson has a multiple electron transport chain deficiencies in complexes I/III, II/III, III and complex IV. (still don't fully understand that)
In addition, the marker enzyme of citrate synthase is approximately of 40% of normal values.
Hudson's mitochondrial DNA copy  was approximately 150% normal values for his age. (and I don't get any of that either...tried but don't get it!)

I would like to increase his lamotrigine dosing to 10 mg taken twice a day. We will go up by 5 mg per week for the next 2 weeks (we are there as of today) Mother will give our office a call in 3 weeks to a month tolet us know on the spasms  frequency. I will continue his seizure medication as currently dosed. I would like to follow up with Hudson in approx. 3-6 moths. The 3 month time period is if seizures continue as currently noted. I f seizures improve then 6 months would be fine."

Dr. S is one who studies Hudson carefully when we are in clinic but doesn't say a whole lot. So I am always fascinated by his clinic notes.

There you have it....I have googled some terms, and may do some more.
Will it change anything? No
Is it depressing? Yup
It is what it is....and I will continue to try and focus on  today and cherish each tomorrow with him.

*Sun*day

Ahhh...finally some sun! 

I took the kids to their school playground.

We had fun hanging out.

At one point, as I gazed upon Hudson only witnessing the fun...

I remember reading a fellow bloggers post about how much their 

boy enjoyed sliding on the slide...

with the siblings...

so  I took Hudson out of his stroller to join the fun.....

don't think he liked it all that much...

could be the choke -hold Hailey has on him....

or maybe it was the electric shock he got on the way down when I grabbed him!

He went down twice ...

with no smiles...

more like sounds of protest!

So I made up for it with some snugglie time.... 

Can you tell how much I love these snugglie moments?

Honestly?

There is nothing better than that sweet angelic boy resting his weary body
peacefully against me...
these are gifted moments...
moments when I know he feels my love
and speaks to me with the peace you can see on his face.

Some friends met us for a playdate....

and we ended up all going to my mom's for homemade clam chowder for dinner...

fun sun day!

*sorry,once again my blackberry took the lovely pics...not great quality!