Not sure if my absence has been noticed much here....
The plain and simple truth is much of life has been tough.
Many struggles, many emotions...sometimes playing them all out here feels like reliving
it all...all over again. Staying quiet, keeping it all in my head, is sometimes easier.
I am willing to share about Hudson....and this is his stage....
The last 2 weeks his seizures have been relentless. It has been such a vicious cycle of riddled seizure days.
That in itself can rip a mothers heart out....it does this mom.
I feel like I am constantly running to his side, holding his hand, through seizure after seizure all day long.
His worst seizure is the tonic. It has gotten stronger...the strongest I have ever seen it. It packs such a punch,
that as it grips him he is doing this gasp/cry, gasp/cry, several times... before the monster lets go of him..
and what was tigthened arms and fists, tightened legs and feet, become limp as noodle.His whole body becomes a rag doll. It is so extreme and so intense it sickens me. Then his breathing pattern change and he sounds horrible. In between those tonics, which he is having 6-8 a day (yesterday 3 in 1 hour!), he is jerking, and having tons of single myclonic jerks and spasms. Our days are filled with seizing, trying to recover, passing out, waking .....only to seize again...all day.
I took him too Children's last Friday, to pick up a Rx...I have emailed our Nero, I have talked to his nurse....on Friday she told me to come to the clinic....she hung out with Hudson and I for 2 hours and watched it all go down.....with each seizure and as more time passed she would call Dr. S and tell him what she was seeing. The end result was increasing his Zonegram to where we were before December and increasing the Vimpat 25mg more. So far...no change. I am suppose to call Fri. and let them know.
The next drug we may try is clobazam...I am sick of them all. Sometimes I wonder what Hudson would be like with out all 4 seizure meds....he is seizure riddled with them....but then he also has to deal with the effects of the drugs....dizziness, sleepiness, loss of vision, headaches....the list goes on....it's all a guessing game and it soooo sucks!!!!!!
In spite of the many grey clouds overhead....there are many rays of sunshine in my life....certainly the quiet, still moments with Hudson when there is a moment of peace, and I know that he knows his mommy is holding him.
There's the fun and pure joy Hunter and Hailey shower me with daily, the letter that came in the mail that said Hudson's denied PT would be paid...THIS time!!!
There are so many moments in my day where I know God is with me...guiding me....walking with me.....
I am trying hard in the midst of the hurt and struggles of life, to recognize that He will work it all out for good. I have to hold on to that.
I had a very hopeful conversation regarding Hudson....God is working on situations in my life....and the lives of the people I love.
Rays of happiness surround me through my friends and family....you all know who you are....and if I haven't been good about telling you....I adore and love each and everyone of you!
I have seen so many of my dear friends and family struggling too....with life.....it breaks my heart....
The truth is life is hard...really, really hard....I believe that those who know Jesus....this time here, living this earthly life... separated from him....this is our hell....this is the worst we will have it.....I am also learning I need to grow through all these struggles, I need to need Him and His comfort, I have to allow these hardships to deepen my faith and my relationship with the only one who knows and has the master plan for my life.
Living those words can be such a challenge....I fail so much.....
In spite of it all....I do feel joy....not always, but I love to laugh and have a good time....I don't ever want to stop living because of this disease and seizures. I refuse to let it rob me or my children....I try and take the sadness and hurts....work through it....find purpose and some kind of lesson through it....then find and feel the joy again. Some days it's harder to do than others.....but I always feel very blessed and grateful for the love of God and the love of friends and family in my life!
Tuesday, January 25, 2011
Thursday, January 6, 2011
The battles we fight
Before Hudson, I never could have imagined the hoops and battles parents of sn/sick kids have to face.
It is really mind blowing, and I wonder if society knew what wars we fight on a daily basis with insurance, schools, peers, government, doctor and therapists, etc. maybe people would give us a little more grace.
I know I have said this before BUT I must remind you...
I get NO help from the state of WA. I get no nursing, no medicaid, no SSI, EVERYTHING has been denied.
The only saving grace for us not living under a rock is Children's Financial Assistance, that has saved us from co-pays and deductible on a 6 month basis.
Last week I applied for the 2nd time for medicaid for Hudson. (was denied the 1st time) because I found out in order to apply for skilled nursing Hudson has to have medicaid. The guy I spoke with on the phone from DDD sends me the application via email but fails to tell me Hudson has to apply and have medicaid in order to even fill out the application for nursing. He did tell me, with mostly the tone in his voice, that he didn't think Hudson would qualify for nursing because he is not trached, he can breathe on his own, but would not deny me the opportunity to fill out the application and submit it, although it likely would be a waste of my time!gggrrrrr! Not a pleasant guy!
The kicker however, was this week, when I had to do a 2nd level appeal with my health insurance because they are denying payment to Hudson's Physical Therapist because we hit our max of 20 visits listed in our plan. Hudson goes to clinic on a weekly basis. Our plans have changed through the last 3 years....when all this started we had unlimited PT visits, last year it all changed. I refuse to only give Hudson 20 visits because a plan says so....He doesn't "fit" the plan, he in not a healthy typical child who had an injury and needs some P.T. This therapy is imperative for his health, his well being, his future to avoid future complications with spine, hips, bones, tone, etc. He needs PT at least once a week and I don't think I am asking too much to ask for an exception to be made. Insurance feels differently. Sending in my 1st appeal with doctors letter, PT letter of justification, and my own plea, wasn't enough...we were denied. So, I went to round 2, which was a conference call with the appeals dept. This was one of the most stressful things I had to go through.
When a gal called to confirm with me the day before that the call was still on, I told her about Hudson, and by the end of the conversation I was in tears on the phone. She was kind, and felt bad for me, but it's not her to approve or disapprove, she just sets it all up.
The call was me, Hudson's PT, a doctor brought in by our insurance co, 2 random people who have insurance with this company, and one employee. The voters were the 2 random people and the 1 employee.
It was the worst 15 minutes of the day...my heart was racing, my nerves were shot, and I didn't even know exactly what to say other than what was on my heart. I addressed the medical necessity, the need because of his mito, the fact that we can't house the equipment that Hudson needs that is in clinic, and then his pt chimed in confirming how we are trying to avoid more medical problems on an already medically fragile child. Finally they asked for final comments and that is when I just told them I am a mom trying to do the very best for my very, very sick son. They were asked if anyone had any questions, which no one did.
At the end of the day, I know Hudson is just a file number to these people. They don't know how precious this little life is, what a beautiful, amazing child he is...I am certain if they took one glimpse of my boy, their hearts would melt and the battle would not have to be fought....who could deny him something so simple? I am not asking for something unreasonable.....
I will get my answer by mail. I am praying it is the *right* answer and I will not have to go to the next level whatever that may be...but I will go to war on this one....and I won't stop....
and if the letter says we got the votes needed to win...I am hoping it will pave the way for all the future denials we will be getting, so it will not have to go any further than a level 1 appeal.
I find it difficult enough to be down this road with a sick child, baring a disease that has no cure, but having to fight these battles feels like salt poured in a gaping wound....it requires more energy, time and frustration that one should ever have to go through....on top of all the other heart-break endured.
As lye in bed that night, I was beating myself up, thinking about what i wished i would have said and wondering if anything I did say have a negative effect. I pretty much over-analyzed the whole 15 minute conversation, thinking how I could have done better, because somehow I am totally responsible for the outcome of this whole thing.
I will take any prayers that the outcome will be favorable and the battle is over...for now anyways!
It is really mind blowing, and I wonder if society knew what wars we fight on a daily basis with insurance, schools, peers, government, doctor and therapists, etc. maybe people would give us a little more grace.
I know I have said this before BUT I must remind you...
I get NO help from the state of WA. I get no nursing, no medicaid, no SSI, EVERYTHING has been denied.
The only saving grace for us not living under a rock is Children's Financial Assistance, that has saved us from co-pays and deductible on a 6 month basis.
Last week I applied for the 2nd time for medicaid for Hudson. (was denied the 1st time) because I found out in order to apply for skilled nursing Hudson has to have medicaid. The guy I spoke with on the phone from DDD sends me the application via email but fails to tell me Hudson has to apply and have medicaid in order to even fill out the application for nursing. He did tell me, with mostly the tone in his voice, that he didn't think Hudson would qualify for nursing because he is not trached, he can breathe on his own, but would not deny me the opportunity to fill out the application and submit it, although it likely would be a waste of my time!gggrrrrr! Not a pleasant guy!
The kicker however, was this week, when I had to do a 2nd level appeal with my health insurance because they are denying payment to Hudson's Physical Therapist because we hit our max of 20 visits listed in our plan. Hudson goes to clinic on a weekly basis. Our plans have changed through the last 3 years....when all this started we had unlimited PT visits, last year it all changed. I refuse to only give Hudson 20 visits because a plan says so....He doesn't "fit" the plan, he in not a healthy typical child who had an injury and needs some P.T. This therapy is imperative for his health, his well being, his future to avoid future complications with spine, hips, bones, tone, etc. He needs PT at least once a week and I don't think I am asking too much to ask for an exception to be made. Insurance feels differently. Sending in my 1st appeal with doctors letter, PT letter of justification, and my own plea, wasn't enough...we were denied. So, I went to round 2, which was a conference call with the appeals dept. This was one of the most stressful things I had to go through.
When a gal called to confirm with me the day before that the call was still on, I told her about Hudson, and by the end of the conversation I was in tears on the phone. She was kind, and felt bad for me, but it's not her to approve or disapprove, she just sets it all up.
The call was me, Hudson's PT, a doctor brought in by our insurance co, 2 random people who have insurance with this company, and one employee. The voters were the 2 random people and the 1 employee.
It was the worst 15 minutes of the day...my heart was racing, my nerves were shot, and I didn't even know exactly what to say other than what was on my heart. I addressed the medical necessity, the need because of his mito, the fact that we can't house the equipment that Hudson needs that is in clinic, and then his pt chimed in confirming how we are trying to avoid more medical problems on an already medically fragile child. Finally they asked for final comments and that is when I just told them I am a mom trying to do the very best for my very, very sick son. They were asked if anyone had any questions, which no one did.
At the end of the day, I know Hudson is just a file number to these people. They don't know how precious this little life is, what a beautiful, amazing child he is...I am certain if they took one glimpse of my boy, their hearts would melt and the battle would not have to be fought....who could deny him something so simple? I am not asking for something unreasonable.....
I will get my answer by mail. I am praying it is the *right* answer and I will not have to go to the next level whatever that may be...but I will go to war on this one....and I won't stop....
and if the letter says we got the votes needed to win...I am hoping it will pave the way for all the future denials we will be getting, so it will not have to go any further than a level 1 appeal.
I find it difficult enough to be down this road with a sick child, baring a disease that has no cure, but having to fight these battles feels like salt poured in a gaping wound....it requires more energy, time and frustration that one should ever have to go through....on top of all the other heart-break endured.
As lye in bed that night, I was beating myself up, thinking about what i wished i would have said and wondering if anything I did say have a negative effect. I pretty much over-analyzed the whole 15 minute conversation, thinking how I could have done better, because somehow I am totally responsible for the outcome of this whole thing.
I will take any prayers that the outcome will be favorable and the battle is over...for now anyways!
Sunday, January 2, 2011
One hope forgotten...
I really hope one day Hudson would know what a gift was...
I know that's a tall order...may never happen...but as he gets older it gets tougher and tougher.
I am over buying him toys...he doesn't know what they are...and they have taken up way to much room in the house.
Bottom line...he has plenty...and one day if he awakes from this seizure/med induced coma they will all seem new to him.
I am as clueless as those who ask me what to get him....the greatest gift he could receive could never be bought buy money...only a gift God could give him....which we will never give up hope.......
Hailey noticed his stocking was empty this year.....
I told her Santa knows Hudson can't have treats by mouth...that was all I could come up with at that moment....
so she decided to share a taste of her candy ...... I think she really felt sorry for him...
Hudson did get some gifts sent from Paul's family in California and it was very nice. It was actually things that he didn't have and were the type of toys that will catch his attention.
my mom and Fred got him clothes..which he can always use cuz he's definitely growing long!
My brother got him the UW blanket which we love...
Santa got him a webkinz because Hailey put it on her list...and Hudson was on the very, very good list!
The sad part was he obviously has no clue what Christmas is.... or presents.... or any of it....
He did this almost the entire morning...
Hunter was thrilled to get 2 of his big wishes for Christmas...
and Hailey was on the good list too...
Daily Hudson pours out gifts....through his presence and his unconditional love in our lives...
and those lives he has touched....
one day I hope and pray Hudson will know the joy of receiving a gift...the way most children know.
I know that's a tall order...may never happen...but as he gets older it gets tougher and tougher.
I am over buying him toys...he doesn't know what they are...and they have taken up way to much room in the house.
Bottom line...he has plenty...and one day if he awakes from this seizure/med induced coma they will all seem new to him.
I am as clueless as those who ask me what to get him....the greatest gift he could receive could never be bought buy money...only a gift God could give him....which we will never give up hope.......
Hailey noticed his stocking was empty this year.....
so she decided to share a taste of her candy ...... I think she really felt sorry for him...
My brother got him the UW blanket which we love...
He did this almost the entire morning...
Hunter was thrilled to get 2 of his big wishes for Christmas...
Daily Hudson pours out gifts....through his presence and his unconditional love in our lives...
and those lives he has touched....
one day I hope and pray Hudson will know the joy of receiving a gift...the way most children know.
Saturday, January 1, 2011
My hopes for 2011
I have never been much of a "resolution" type when it comes to a new year.
Change, comittment, tranformation....all those adjectives that go along with resolutions....those should be a constant chase no matter what time of year.
So....
I haven't put a whole lot of thought into what direction I want things to go for 2011...
I have random desires of the heart....I guess maybe this will be a great way to revisit this page
this time next year to see where my desires were fulfilled....
(in no specific order and trying to be realistic)
*to see the seizure monster tamed if not slayed....praying a new med will give my boy a chance know what life is like with some seizure control
*no more infantile spasms!!!!!!!
*for Hudson to hold his head up
*I would like this to be the year we get specific info on where this disease emerged from
*to feel peace
*to see Hudson smile or giggle
*to find we are steps closer in some kind of treatment for mitochondrial disease that will benefit H
*to slow down and appreciate the quiet moments with my children
*those in my life who desperately need God would seek him out
*that I seek God (instead of turning my back) out when I feel alone. lost and fearful
*getting skilled nursing care for Hudson
*somehow I find a way to take time for me....which will only result in getting skilled nursing for Hudson ( i am working on this seemingly impossible task)
*continued health and happiness for Hunter and Hailey
*less hospitalizations for Hudson
*my 14 yo Lab continues motoring along
*financial stressors relieved
*trusting God with our work/living situation
*treasure and take time for friends and family who are dear to me
*feeling content and happy and loved
* to recognize the **small** miracles unfolding around me in every day living
Thinking about the "big picture"...that there is a whole year ahead, that can provide time for much change...in good and bad ways....overwhelms me.
Since Hudson, I have learned how to live day by day.....
....I try not to think of what the future may or may not hold....
I pray for much of the above to be in my future and will continue being grateful for each day I am given and the lesson learned in that day.
Change, comittment, tranformation....all those adjectives that go along with resolutions....those should be a constant chase no matter what time of year.
So....
I haven't put a whole lot of thought into what direction I want things to go for 2011...
I have random desires of the heart....I guess maybe this will be a great way to revisit this page
this time next year to see where my desires were fulfilled....
(in no specific order and trying to be realistic)
*to see the seizure monster tamed if not slayed....praying a new med will give my boy a chance know what life is like with some seizure control
*no more infantile spasms!!!!!!!
*for Hudson to hold his head up
*I would like this to be the year we get specific info on where this disease emerged from
*to feel peace
*to see Hudson smile or giggle
*to find we are steps closer in some kind of treatment for mitochondrial disease that will benefit H
*to slow down and appreciate the quiet moments with my children
*those in my life who desperately need God would seek him out
*that I seek God (instead of turning my back) out when I feel alone. lost and fearful
*getting skilled nursing care for Hudson
*somehow I find a way to take time for me....which will only result in getting skilled nursing for Hudson ( i am working on this seemingly impossible task)
*continued health and happiness for Hunter and Hailey
*less hospitalizations for Hudson
*my 14 yo Lab continues motoring along
*financial stressors relieved
*trusting God with our work/living situation
*treasure and take time for friends and family who are dear to me
*feeling content and happy and loved
* to recognize the **small** miracles unfolding around me in every day living
Thinking about the "big picture"...that there is a whole year ahead, that can provide time for much change...in good and bad ways....overwhelms me.
Since Hudson, I have learned how to live day by day.....
....I try not to think of what the future may or may not hold....
I pray for much of the above to be in my future and will continue being grateful for each day I am given and the lesson learned in that day.
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Hudson Tyler
Our sweet angel!