pics and stuff

We had a pretty mellow day...

I did a little cleaning...

I worked out on the eliptical.
I could have caved and thrown in the towel.
Hudson had a small seizure right when we entered. It set him off to cry/whine the entire 30 minutes I was on the eliptical.
Hunter and Hailey were on treadmills and bikes and they were so chatty and loud and goofy.
Thankfully we were the only ones in there.
I do like to get in my "zone" if I work out. I don't want to have chatty talk with my kids, or listen to Hudson scream, or watch Hailey do tricks on the treadmill....I was envisioning a trip to the E.R. with a broken limb.
I powered through though and I did it. Even managed to lift some weights.
I am tempted to leave them all as they sleep and go get my work out in now...peacefully, so I can get in my zone, but I know I can't leave 'em darnit!

Paul found us in the work out room and had lunch with us. He is only 5 min. away from his office.
Never have we had him work so close to home.
Nice treat, AND...
he found my phone!!!!!

The pool was closed for cleaning so we hung out inside. Hunter did a little skateboarding and scootering, but it was too hot to last to long.
110 yesterday.

So far Hudson is managing well. Yesterday was a very good seizure day. Only small ones, no vomiting. He has been a little "whiny" at times, but nothing too bad. After dinner last night we sat on the patio. Hudson quieted down. It seemed as if he liked the heat? weird. Anyways, as long as the sun is not beating on him and he isn't out too long he is doing just fine in the heat.

It is an odd thing....
I am so used to having therapies, and so much to do in a day, it is weird not to have our regular routine. I think I could get used to having this sort of break for a while. Sometimes all the therapists and things to do and people to see back home becomes too exhausting....but I am always in that mode so I really don't know any other way...till now...a break is good I think. For me anyways. For Hudson...probably not. He needs PT, OT, Speech, etc, etc. I am sure the guilt will settle in if I don't find someone to work with him out here. For now I will stretch him and do my best.

Today will be spent at the pool...after another work out. Paul will come home for lunch at noon and then home around 4:30 ish. Really great to just be together as a family.
**************



A FUNNY.....

Hunter just woke up and asked.....

"Mom, is this possible, because this is really weird.....
is it possible that your butt can sweat? because I just woke up and I know I didn't pee the bed, but my but is all wet and sweaty!?!?!"


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

and now pics....

Road-tripping

boys time at the hotel

kids made a new friend during our stay in Vallejo

Vallejo, CA at Paul's childhood friends house.

Petra made us homemade chicken tamales...they were amazing!

our last stop before hitting Vegas

the view for 4 hours til we hit Nevada

kids hit the pool as soon as we get unpacked!

this was taken off our patio...the kids are raczoring the walkway. (Hailey is trailing behind)

Hudson dangling his toes in the pool

 with daddy

Settling in....

I have had a request to update my blog, so here goes.....


holy heat-wave!!!!! It is H-O-T! DOUBLE DIGITS..... (108 today)

No, I am not complaining....at home....60's and clouds and rain....sun is a foreign substance to our pale WA bodies, but it feels soooo good.

We arrived on Saturday afternoon. We drove the strip coming into Vegas, and the kids were sooo excited. They have never seen anything like it. They love the new house, and of course Day 1 they were in the pool.
We met some interesting folks at the pool. There was actually a bit of a party going on. Apparently these people were moving out this week and were having one last harrah! We started talking to this guy whom we found out is a pediatric respiratory therapist. We told him about Hudson and he told us about one of his best friends who had a son with mito.
Yes, had. Apparently he died at 8, but they were told he would only live til 3, so he did better than expected. I met his wife, mom to 4  year old twin girls and a 7 year old girl. She also said she had a cousin who had epilepsy and was very familiar with seizures.
Sounds like a match made in heaven for us huh?
I wasn't so excited about this meeting...it may sound like a amazing coincidence, to find folks who could understand our little Hudson, and told us several times they would love to "help" us.
But....I felt, and still do, a little uneasy.
Probably because he was pretty wasted. Slurring his words, repeating himself over and over. He was one of those that was just annoying after a short time....probably due to excessive drinking.
He apologized. He knew. He said this was not their norm....but still....not a great 1st impression. Especially when I am suppose to consider leaving Hudson with his wife. I am not even sure we will hear from them. We did exchange numbers. I won't call her, but if she calls me, I may try her just to sit in the house with Huds while I am at the pool. I admit, I am not a very trusting person, and I need to go with my gut...especially when it comes to any of my babies!
 For now, we have been able to leave Huds in the house when the kids want the pool and we just check on him. He is such an angel. He looks at the t.v. and seems happy.
The kids can't last more than 2 hours outside because of the heat, so it works o.k. Today, with paul at work, will be the true test!

Hudson did amazing on the drive. His seizures rampt up a bit since the firsday we left, but we had not 1 vomiting episode in the car. We had no crying episodes as well. The 2 things I was concerned about prior to leaving.

Yesterday we headed out and went to Target and Costco. We did our best to get Hudson in and out of the car quickly, and into the air condition. We used his cooling vest and I actually think it helped. It's a weird thing, but his cheeks lost the red-heat color once he was wearing it, so I think it will help when we do need to take him out.

For now all 3 kids are sharing a room. Paul has had a "renter" and he will be moving out this weekend. His room will be Huds room. For now the kids have to use our bathroom as well. Not fun. I had to try and figure out how to give Hudson a bath in the shower.....lets just say he was screaming! I bought a cheap pool raft and tried putting him on it and used the shower head to bathe him...it was a nightmare! It will be nice when I can use the other bathroom with the tub.

Today Paul is back at work. I plan to stay here all day, especially after venturing off on my own and going to Trader Joes, I got a bit lost. I am directionally challenged and I hate driving where I don't know where I am going. My plan....relax, clean house and do laundry, pool time...WORK OUT!!!! I have absolutlely no excuse....the clubhouse is right across from us and I am taking all 3 monkeys over there at some point and get a good work out in....maybe they can too!!!

I feel like I lost a limb....
I can't find my phone. We don't have a landline. I had it last night. I have searched everywhere in this house. Even garbage cans. My phone is my email, txt messgaing, EVERYTHING....so please cross your fingers that it mysteriouly shows up soon...I am sooo lost without it! Plus, I would need it in case of an emergency, so it has to show up soon!

That's it for now....need more coffee and time to feed the little people!

day 1 on the road....

We drove 10 hours on Wednesday, rolling us into Redding,Ca at about 9 p.m.

The 3 H's did amazing....Hunter and Hailey have come a long way since our last long road trip.
They were so good, and patient, and just fun!

Little H....
I really felt him/us lifted in prayer yesterday....
so to all of you thinking of our family and praying for us, thank you....
and if you don't mind....
keep it going!

Hudson did not have 1 bad/hard tonic seizure....NOT ONE!!!!
Which means NO VOMITING either! HUGE!!!!!
He slept alot...in fact, he was asleep more than he was awake in that 10 hours of driving.
I thought he would never sleep through the night, but he did...
he has been such an angel.
What 3 year old would sleep on a chair/ottoman as a bed?
the rollaway never came, so I pulled the chair up next to the bed and put blankets on it, etc.
He slept the whole night....NO SEIZURES to wake him!

Really this is unheard of for the way life has been for him at home.
I know the Lord is protecting his little body...I can only pray it continues.

We are getting ready to drive to Paul's hometown, Vallejo, CA where we will stop and have dinner at his very good childhood friends house. She is making homemade chicken tamales! Yum!

Today will be a much easier drive.

Lucky streak over...Hudson just had a hard tonic....keep lifting him in prayer...PLEASE!
Will continue to be grateful for the great day yesterday, and hope for another one today!

the eve of our leave

It's here... the night before we take off from little Gig Harbor...cloudy, cold, rainy WA...heading to the 100 degrees desert.
It has taken more than you can possibly imagine to get to this day.
I feel like I have been running a marathon just in preparing for our departure.
I should rephrase...my brain has ran the marathon...

I have spent months talking about, preparing for tomorrow.
I have talked to all of Hudson's doctors...
I have talked to insurance...
I have called hospital in Nevada...
I have spent hours on the internet looking for anyone who knows anything about mitochondrial disease in Nevada...
I have worked with his PT to get me a swim/therapy preserver and aqua jogger so H can move freely in the pool
I have put a binder together specifically for Nevada containing most recent clinic visit dr. notes, med list, home supple list, ER protocol sheet, VIP phone numbers in case of an emergency....
I have spent the last five days packing for me and my 3 H's...
I have been doing laundry every day, so there is nothing piled up when we get home...
I have spent many nights awake, tossing and turning worrying about my angel and whisking him away from all I know to be a safety net for him....and me.
Today I packed some more.
I packed the car.
more laundry.
washed bathroom floors, spot washed kitchen floors, cleaned all bathrooms and laundry room...
in between work this morning, feeding faces, making med's, tube feeds, seizures, 2 rounds of vomit, vacuuming the car, shopping at Target, returning library books...it is endless really. The only reason I am here on the blog is because I have to stay up til midnight to pick Paul up from the Inn at Gig Harbor (he is taking the airporter)

Clearly I have had a busy day....
my blog title is really the title of my mind today...give him to God...Hudson is in His hands...he will protect him...STOP WORRYING!!!!

Wonder why my worry meter has gone up today? Well, one of our Mom's morning out regulars brought her daughter in sick. She told me she was probably just teething, so don't worry if she feels warm. The mom waited till I could hod her before she left...she never has to wait for me to hold her, she is usually very happy to play...not today...definitely not herself...she wanted me, and had me. Her snotty nose, warm little body pressed up to mine, she did not want to play at all...her eyes were glassy and tired. By 10a.m. I called the mom to pick her up...she clearly had a fever, clearly was not a teething issue....she was plain old sick!!! This was somewhat confirmed when her 4 year old brother informed me that she had thrown up after eating baby food last night. I actually really like the mom BUT it fries me a bit. Clearly you shouldn't take your kids to any day care setting if they are sick...we have all this signs up, clearly her few hours are more important than exposing others to her kids illness. She is aware of Hudson, and his illness. She has asked me questions, i am certain I told her about the swine flu and hospitalizations....gggrrrrr!!!!!
The gal I work with was kind enough to insist that I leave. She knows we are heading out of town, she heard a brief run-down of Hudson in the hospital for a simple cold...which leaves him lifeless and hospitalized...she saw me washing my hands a bazillion times and telling Hunter and Hailey to do the same...I was grateful she told me to leave.

I have been checking Hudson's temp. I think every time I touch him he feels warm. I am going crazy with worry.
Tomorrow we leave and what if????
I can only pray, trust the Lord will protect him, and just march forward.
I don't want my worry to ruin my excitement.
I would hate that.
I need sleep and this sick baby just added another thing for me to stay awake and worry about tonight.

You know what sucks even more....the ability to not know why my child cries.
I hate to say it...
I don't even know why this is happening...
but Hudson has recently been having crying jags.
It can last a few hours.
It has been happening several times a week.
I don't know why.
Of course tonight I was convinced it is because he is getting sick.
I am sure it is more a neurological thing.
Nothing typically help....no arms, no singing, no Motrin...nothing!
Makes me feel helpless and I hate the guessing game.
All I thought about was having to deal with these scream fests in a hotel...
I think I will be screaming...
Paul does not do well with hours of crying...
I am more patient, but I have to say...it can wear my eardrums thin and that only makes me feel guilty for feeling that way. I pray, pray. pray that he feels good and the crying jags subside...at least while we are on the road.
I am left to guess if the lamictal is causing the fussiness, the vomiting up certain meds like luecovorin, seizures, a illness???

So he is in His hands....he always was, he always will be...
even here in Seattle, with all his mito researchers, and extraordinary docs....
ultimately he is in the hands of God...
No matter where we are...it doesn't change where God is.
I know this.
I may be being tested on this one...
trust.
can be a toughie...ya know?


Dr. S raised his lamictal again today (40mg 2x per day)


Please keep this precious face in your prayers...

such sad faces

This is H at PT Monday trying out his new flotation device!

dad....

If red roses grow in Heaven Lord, pick a bunch for me. Place them in my Daddy's arms & tell him they're from me. Tell him I love & miss him & when he turns to smile, place a kiss upon his cheek & hold him for a while. Remembering him is easy... I do it everyday. But there's an ache within my... heart that will never go away... 

 

 

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

 

                          Never Alone!

                          He can calm the troubled waters
                          When you walk in dark despair.
                          There is hope when you feel helpless
                          Knowing that the Lord is there...

                          Sharing in your sunshine moments
                          Or in valleys deep and wide,
                          He is always by your side.

                          There's no other friend so faithful
                          Through the sunshine and rain,
                          Through the teardrops and the laughter,
                          In your joy and in your pain.

                          We could never, ever thank Him
                          For His love He gives so free,
                          Never changing...never ending
                          Throughout all eternity.

                          Oh, the wonder of all wonders
                          As we live from day to day,
                          Knowing that we have a Father
                          Who is with us all the way.
                                         Poet, Gertrude B. McClain

     So to Dad's everywhere, Grace and peace to you from
 God our Father and from the Lord Jesus Christ,
 on this your day and throughout the year, and may God Richly
 Bless You as well!     Amen.                             ( Romans 1:7 )                        

one day later, and great friends!

I have not talked to Paul much at all this week. He has been traveling the East Coast, and being 3 hours later than us, it makes it hard to connect. The one time we did speak, I heard through the fuzzies of my blue tooth, that he had to attend a meeting on Wednesday and he would have to fly up Wednesday night and we would try and hit the road Thursday. No surprise...really, I am used to this kind of stuff coming up...it always happens! Plus, another day to prepare for our departure, and with the kids home I can use an extra day. I have been working more than usual this past week, the gal I work with had surgery, so I have been filling in for her. The kids, all 3, have been with me. They have been great...as long as Hunter has his DS, and Hailey can do arts-n-crafts, but boredom had settled in after the 2nd day of toting them to Mom's Morning Out. I got a call from one of Hailey's good friends and she offered to take both kids for the day. She has 3 kids...a boy who is going into the 6th grade, a girl in Hunter's class, and another girl in Hailey's. She picked them up at my work 10:30 a.m and I didn't see them until almost 5! I was able to go to the mall with Hudson and get a new purse, sandals, and sandal for Hunter. I also toted Hudson with me to get my haircut, where my hairdresser got to witness and tonic and vomiting....I think she was a bit disturbed by what she saw. As she snipped a chunk of my hair I bolted out of my seat to attend to Hudson, right next to me in his stroller, to hold his hand, and catch the formula he was to spew it out his mouth.It sucked..the whole thing...to deal with it in a hair salon...to see him go through it in public...to have spectators and vomit...it blows! I could just feel a layer of sadness cover me after washing him up, me up, and worrying if the time I spent taking care of H, was going to make her work schedule late, I sat back in her chair and she finished up cutting my hair.Thanks for suggestions on curtailing the vomit. It still blows me away that I am dealing with this on a very daily basis when technically he should not be able to throw-up...was the Nissin surgery a unnecessary procedure? I hate to think he went through that for nothing. Just a few minutes ago, as I type, Hudson had "one of them" and I had his g-tube extension right next to me cuz I had just fed him, and I was able to let about 2 oz. drain out through his seizure. He sounded "urp-e" but thankfully venting can curtail the seizure. It just depends if I have everything on hand quickly enough to to vent before he is too far into the seizure. This morning it worked :)
SO back to the playdate...I picked my 2 H's up and they had a BLAST! This family lives in a house tucked back into 5 acres of woods...woods completely surround their house. They have rope swings off of trees and tree-houses, and a "hansel and gretel" house tucked deep into the woods, and a stream to get really muddy in....Hunter had to show me it all when we got their! Their feet were black, their toe-nails were dirt-filled, they had branch scrapes....and they loved every minute of the great-out doors/adventure! Hunter and the older boy got to play laser tag and nerf guns in the woods too...Hunter couldn't imagine anything more fun! When he cam e home he had to go in our back yard to see where he could hang a rope swing! I don't think I could ever live up to that playdate but I did offer when it is rainy and they can't play outside, to come to our house!Another friend offered to take my kids this morning so I can do some more shopping for our trip. Mom's totally get the pain of having to take 3 kids to run errands....it is so painful...especially with a child like Hudson...adding the other 2 to the mix can make an outing exhausting....Hudson alone, with the stroller and worrying about seizures and vomit, runs me thin.  I am so grateful for the "life-line" of friends I do have to ease some of this burden. Having no husband around has made me so much more aware of those who are trying to help, and those who truly care. I have never been one to accept help, especially from friends, "I am fine" or "I can do it" has always been my motto....but you know what...I can't always do it, and I am not always fine, and to have friends who are like family, and allow me to feel o.k. in accepting their help, because I know they are sincere in wanting to lessen the burden for me, well all I can say is thank you. You know who you are. You know how much I love you. You know your help allows me to breathe. You know you are a part of this life-line of mine that I grasp. You know I value you in my life. THANK YOU! 



update....meeting canceled and we leave Wed again!!!! :)

Still here...

been taking a small blogging hiatus.

I guess you could say I am sick of blogging bad news, so I would rather not blog at all.

I have also been insanely busy with end of the school year stuff, and my baby girl graduating Kindergarten.
Anyone with school age kids knows what I am talking about.
The end of the year activities swallowed me whole...
in between therapists, dr. appointments, seizures, vomit, household duties(which have been so neglected lately) and trying to organize 6 weeks in Vegas...

And now, this week....

summer vacation...kids are home, and my time is swallowed by three little people, who I love and adore, but the hour here and there of  "me" time (If it ever really existed) is gone!!!!!
I did get to go out last night for happy hour with a friend for a belated bday celebration.
Amazing what happens when you put 2 moms together, whose husbands are out of town, and who have little kiddos at home....hours of talking goes by...and seems like minutes! (Thanks for the fun ML!!!)



Hudson...

nothing has changed, which is why I may keep my distance...

Dr. S increased Lamictal again (35mg 2x day) and decreased the Vimpat. I think he will wean Huds off the Zonisamide when we get back home. He wants to "simplify" his meds.

He encouraged the cooling vest, so I ordered it this morning. 

Hudson still goes strong with tonic seizures. He is still in the pattern of seizing and throwing up. It sucks.
Especially when I am in the car and can't help him. Especially when he saturates his clothes as we are going to a high school graduation. It has been a daily, sometimes several times a day, occurrence.

I hate it. This seizure/vomit pattern.

It is sad when...
I am happy he has a big 'ole giant seizure PRIOR to feeding time, because I know I am safe to feed afterward.

Mito nurse saw the "performance of a lifetime" by Mr. Hudson. I begged Hudson to wait and save a seizure for Dr. S, but he couldn't wait that long....Dr. S was late for our appt. Pam saw the whole thing....seizure, projectile vomiting all over the wall, the "pass-out" after the big event....at least she knows I am not one to exaggerate what I see....my emails and phone calls were justified in that moment!


The countdown is on....

we will be on the road next Wednesday heading to Nevada.
Not sure if I will get to blog between now and then...
so if you remember to....

please keep our family in your prayers...

safe travels as we leave next Wednesday (23rd)

but most importantly....

Hudson has an "uneventful" time away from home, and we get a huge dose of a family time together...
we  are all sooooo excited!

Hoping a dose of family, sunshine and heat brightens my spirits!

The struggle continues...

Hudson has once again gotten an increase in the Lamictal this week.
We are now at 30 mg 2x a day.
He is vomiting frequently, and it is completely seizure related. If I feed him and he seizes within an hour of that feed, it is likely going to come up. It is beyond me why this waxes and wanes...sometimes we go weeks and months without the pukes and then out of the blue it all changes and he is throwing up daily. Lets not forget he is not suppose to be able to throw-up...the nissen is in tact...mito is so unpredictable!

Anyways, we just can't seem to get a break...ever!
On top of it all, he sounds gunky and I am so scared something is brewing that could land him in the hospital and scratch Vegas, so I started him on antibiotics last night...I just can't risk something snowballing like it did last time. We are not full of good luck around here, so I could see something crazy like that happening.

I guess my head is still in a foggy place.
I am not sleeping well, at all.
I feel a bit anxious

I got a call out of the blue from nuerology today. It was the scheduler for Dr. Saneto saying that they had a opening for Tuesday to get Hudson in. Last I heard, Dr. S didn't feel the need to see Hudson before Vegas, so this call was very unexpected. After scheduling it, I got off the phone and felt my stomach knot up and my heart start to race. My first thought was maybe they got something back on his DNA study and needed to see him. I just went straight to the "bad" place, and then I try to convince myself it can't get much worse, right?
I just felt panicky the more I wondered why they want to see Hudson in clinic all of the sudden.
My mom convinced me to call Pam and ask. So I did. I knew I couldn't go all weekend with a knotted stomach.
Of course I missed her phone call and when I listened to her message I was relieved to hear her say she thought of Hudson when they got this cancellation on Tuesday, Dr. Saneto did not ask her to call us in, she just thought for everyone's peace of mind he should be seen.

Yes, as many have commented, I have an amazing group of doctors and nurses and just all around support from Seattle Children's.
Children's Home health, where I get all supplies and formula, have been absolutley amazing in figuring out the numbers of what I will need, sending me a check list, when and what will be shipped to Nevada, etc.
It is a huge blessing to have such a great team behind this complex boy of mine. I realize not all Children's hospitals are the same through many of you who blog about your experiences, so I am very grateful.

Next week ends school for my 2nd grader and kindergartner. I just can't believe it. The school year flew by, and I imagine the summer will to.

Speaking of summer and the fact we will be in Nevada for 6 weeks where it is already 100+ degrees...I need some advice....I am looking into getting a cooling vest for Hudson. I know nothing about them, only have read about some mito famalies who live in hot climates  say they use them for their children. If you have any info, good or bad, if you have a brand you recommend, or if you know if insurance typically would cover such an item, could you let me know. I am going to ask Dr. S about it on Tuesday. I don't even know if Hudson will be able to be outside to use one. Pam said he can not be outside in fear of dehydration which would land him in the E.R. Any experience/info would be greatly appreciated.

Thanks for the prayers, love, support. Part of my survival and keeping life moving forward is this blog and all the great people who share in this journey with me, offering up their love, prayers and support.

I hope you know you make my struggles a bit easier, so thank you!

breaking point

This post was supposed to be titled "summer doo"

fun and happy...those were my intentions...BUT

I am not feeling fun and happy...at all!

No, I have an ache that has been with me the past 2 days. I think I "manage" for so long, just getting through each day and what is considered to be our "normal" and then this ache starts creeping up on me...
with every seizure I see
with every spasm that trembles and quakes his little body
with each round of vomit that I am holding his head to prevent choking and aspirating
...another bath to rid the smell of sour formula
...the tired look in the eyes of an angel who fights this battle day after day, hour after hour, minute by minute.

I ache as I see him suffer like this.
I can feel it creep up on me and choke me and I then need to release...

my tear stain face, eyes red and swollen within minutes...because I cry so hard,I cry out loud....
for mercy and deliverance, praying that Jesus is near me and that I will feel his presence
and yet the ache truly never leaves me.
So I blog...more purging....praying the overwhelming ache would somehow cease. I have that feeling in my throat...that I am at my emotional max, that if I don't purge I WILL choke.

Choking back tears and emotions like this aren't healthy.
That is why I think I am at my max...I choke them back for so long and then have days like I have been and today is just the day of release.

and so I purge more....

I feel like a failure.

Mainly to Hunter and Hailey.
I feel like I am responsible for so much, too much, and their well being, there health is all a reflection of me.
Bottom line...my kids are good eaters...they like food.
The level of activity hasn't been the greatest mainly due to weather, Hunter opted not to do baseball this year and Hailey isn't really in to sports. Bottom line...they are a bit chunky. I feel responsible. I feel like I am failing them. I feel like it is a reflection of my brokeness. I feel like a failure.
If they both lost 10 lbs they would be fine...doesn't sound like much, but for little people, 10 lbs. is a lot!

Then there is Hudson's physical needs....

stander
stretching
playing
excersizing

I just feel like it is too much for one person...

It feels as if the well-being
the progress or lack there of...
for all 3 of my children is in my hands...

and I feel like I am failing miserably!

Then I see the daily seizures...

do you see why I am at my breaking point?

I am tired of the ache...
it feels as if it will never go away, because it won't....

but the purging allows for the ache to build back up until I reach the next breaking point...

only to go through the motions all over again.

I am not looking for anyone to tell me I am not a failure...
I don't need any cheerleaders...

I probably wouldn't "buy" it anyways...
not today at least...

time to wipe my tears and face the day...

PT will be here in 20 minutes...
must hide the evidence of my pain...

I'll just leave you with this...

the face of an angel.

Here is what was suppose to be titled "SUMMER DOO"

After his haircut on Sunday he slept all day....
so the next pics were taken this morning...
right before a tonic and vomitt...
and my breakdown!