thanks for crossing fingers, toes, prayers said...
he didn't get on the 2:40, but he get on the 3:20, which was nothing short of a miracle.
All the SA's from the 2:40 transfered over and the flight was showing 8 open seats and 16 SA's...
when I got the text he was on I was floored!
Let the weekend begin....2 more hours and daddy is home!
Thursday, April 29, 2010
Emotions running high
Paul is suppose to come home tonight.
Suppose to...because he is flying space available and the flights are tight...and worse tomorrow!
Up until now he used miles, those are all used up. I bought a couple Alaska passes from my brother
at about $36.00 one way....the catch...space available!
Just worry I will have 2 sad kids if he doesn't make that 2:40 flight this afternoon.
Sunday comes way too fast and it has been since Easter the kids have seen him.
There were many tears last week. Mostly Hailey. Which hits hard for me because I don't know the father/daughter bond. I just know a girl needs her daddy and I didn't have mine because he was taken way too early.I was 3.
So it is heart breaking to see her fall apart, at the sound of her Daddies voice over the phone, knowing how badly she misses him. Paul gave her his business card with his cell# on it and told her to call anytime. She has never used it. We usually pass the phone when I talk to him.
When a therapist was over last week working with Hudson, Hailey had diappeared.
Not realizing she had been upstairs for awhile, I heard her come down the stairs, she walked over to me, buried her face in my lap, and started bawling. I had no idea what was going on. I asked if she was hurt, and she said no, picked her tear stained face up put off my lap and cried " I miss my daaaddy!" and threw her head back down and resumed her sobbing. I couldn't figure out why out of the blue she was so emotional over this...I know this happens when she talks to him. That is when she told me she used his card and called him.
She has been doing it alot since last week. Picks the phone up to call him, without me knowing.
I think we need to set up skype when he is here. Thinking it may help if they see him, like he is in the room with them.
I have a mom-looser confession. I feel horrible. The kids had their award assembly at chapel yesterday. The school does it for each quarter. I work on Wednesday's from 9-12. If there is a special happening at chapel, I will wake up really early to get all of us out the door so I can catch chapel and race off to work. When Hunter was awarded, the teacher told me ahead of time. I was there for him, had the camera and video camera...I picked up the kids form school and Hailey said she got an award as she piled in the car. My heart sank. I knew nothing of it. Seal of Distinction from her K teacher. For these kids it's a big deal.
I asked Hailey if she knew she was getting it and she said no. Then she said " I am a dummy!"
What? She was mad at herself because her teacher put a folded piece of paper in her back pack and told her to give it to me....She forgot...I never got it :(
Hailey was crying calling herself a dummy. I tried to "fix" things with hugs and kisses and a celebratory dinner out. Which started making Hunter feel bad. I reminded him he got his award 1st quarter. Spirits brightened when my brother surprised all of us when he walked up to our table at the restaurant and sat down.
He drove up from Portland.
The kids emotions can make me crazy at times. handling my own is hard enough, and they are much like me with sensitivity and crying easily.
Another Hailey moment this week...
I had folded laundry and asked Hunter and Hailey to take their piles to their room and put their clothes away.
I said I would take Hudson's. Hailey sadly said..."I wish Hudson could use his legs and put his own clothes away."
Her wheels are always spinning. She is a bright little girl.
I worry my decision in keeping the kids here will cause resentment. I hope they grow up knowing I tried to do what was best for all 3 of them. I had this conversation with my mom a few days ago. She talked sense into me, she made me realize I am doing the best for them, and that they know and feel my love. I don't know how long this "season" will last, so we must continue one day at a time.
As this week ends....May begins. Hudson's birthday month. That will be another post...many, many I am sure, as I work through those emotions. School district meetings. What to do for his birthday.
Emotions running high....
but for today...
looking forward to the flow of happy emotions as we are together as a family this weekend!
PLEASE LET PAUL GET ON THAT 2:40 FLIGHT!!!!!! fingers and toes are crossed!!!
Suppose to...because he is flying space available and the flights are tight...and worse tomorrow!
Up until now he used miles, those are all used up. I bought a couple Alaska passes from my brother
at about $36.00 one way....the catch...space available!
Just worry I will have 2 sad kids if he doesn't make that 2:40 flight this afternoon.
Sunday comes way too fast and it has been since Easter the kids have seen him.
There were many tears last week. Mostly Hailey. Which hits hard for me because I don't know the father/daughter bond. I just know a girl needs her daddy and I didn't have mine because he was taken way too early.I was 3.
So it is heart breaking to see her fall apart, at the sound of her Daddies voice over the phone, knowing how badly she misses him. Paul gave her his business card with his cell# on it and told her to call anytime. She has never used it. We usually pass the phone when I talk to him.
When a therapist was over last week working with Hudson, Hailey had diappeared.
Not realizing she had been upstairs for awhile, I heard her come down the stairs, she walked over to me, buried her face in my lap, and started bawling. I had no idea what was going on. I asked if she was hurt, and she said no, picked her tear stained face up put off my lap and cried " I miss my daaaddy!" and threw her head back down and resumed her sobbing. I couldn't figure out why out of the blue she was so emotional over this...I know this happens when she talks to him. That is when she told me she used his card and called him.
She has been doing it alot since last week. Picks the phone up to call him, without me knowing.
I think we need to set up skype when he is here. Thinking it may help if they see him, like he is in the room with them.
I have a mom-looser confession. I feel horrible. The kids had their award assembly at chapel yesterday. The school does it for each quarter. I work on Wednesday's from 9-12. If there is a special happening at chapel, I will wake up really early to get all of us out the door so I can catch chapel and race off to work. When Hunter was awarded, the teacher told me ahead of time. I was there for him, had the camera and video camera...I picked up the kids form school and Hailey said she got an award as she piled in the car. My heart sank. I knew nothing of it. Seal of Distinction from her K teacher. For these kids it's a big deal.
I asked Hailey if she knew she was getting it and she said no. Then she said " I am a dummy!"
What? She was mad at herself because her teacher put a folded piece of paper in her back pack and told her to give it to me....She forgot...I never got it :(
Hailey was crying calling herself a dummy. I tried to "fix" things with hugs and kisses and a celebratory dinner out. Which started making Hunter feel bad. I reminded him he got his award 1st quarter. Spirits brightened when my brother surprised all of us when he walked up to our table at the restaurant and sat down.
He drove up from Portland.
The kids emotions can make me crazy at times. handling my own is hard enough, and they are much like me with sensitivity and crying easily.
Another Hailey moment this week...
I had folded laundry and asked Hunter and Hailey to take their piles to their room and put their clothes away.
I said I would take Hudson's. Hailey sadly said..."I wish Hudson could use his legs and put his own clothes away."
Her wheels are always spinning. She is a bright little girl.
I worry my decision in keeping the kids here will cause resentment. I hope they grow up knowing I tried to do what was best for all 3 of them. I had this conversation with my mom a few days ago. She talked sense into me, she made me realize I am doing the best for them, and that they know and feel my love. I don't know how long this "season" will last, so we must continue one day at a time.
As this week ends....May begins. Hudson's birthday month. That will be another post...many, many I am sure, as I work through those emotions. School district meetings. What to do for his birthday.
Emotions running high....
but for today...
looking forward to the flow of happy emotions as we are together as a family this weekend!
PLEASE LET PAUL GET ON THAT 2:40 FLIGHT!!!!!! fingers and toes are crossed!!!
Tuesday, April 27, 2010
Relationships/Friendships
I have learned through having a sick child....
Relationships change.
Friendships change.
For those of us who have a sick child, we know the added stress and pressure it can place on a marriage.
The divorce rate is something like 80-90% when a child has a diagnosis.
It can be devastating.
It also can change the dynamics of friendships and relationships...
people who you thought you could lean on.... abandon you
those who you thought couldn't handle your "new normal" become your rock...
strangers on similar paths become your closest friends and family.
For me personally...
I have experienced so many changes with my relationships and friendships with others since Hudson came into our lives as a sick baby.
I said goodbye to a childhood friend. A friend I grew up with, a friend that we dreamed as little girls of moving to CA and raising our kids together and them being best friends like we were. We had always kept in contact no matter where we lived...when I was finishing highschool she was in Arizona, when I was in Chicago she was in Seattle...then finally 12 years ago I move back to Seatlle and we start having babies and would get together occasionally, and I realized we had both changed a lot. Not a bad thing, just we were two totally different people as adults. When Hudson became sick, it became evident to me I did not need the added stress of maintaining a friendship with someone who cared only about themself and I what I could give to them. It was a one-way friendship. She never saw Hudson once he became "ill" she never came to be with me, help me, or be a "shoulder" I had to say good-bye...and I did.
I also had friendships that become null and void once Hudson was sick.
Friends that I saw and spoke to on a weekly basis...that just seemed to disapear once it was evident we had a sick child to care for. I am not sure why this happened. I am not sure if some are just uncomfortable with the fact that our world was rocked to the core, that life took a turn for us, and some friends didn't know what to say or do, so they just "went away." I do think about it though, and wonder. Obviously not the greatest of friends.
Which leads me to this....
you sort of find out in crisis who your "true" friends. There are those who make it very easy to walk away from, and when they have walked away from me...well, I don't need them!
I also had friends through this that have become like a "rock"
They never change
They are their for me...to talk with, lean on, cry with, laugh with...
They don't disappear
They don't treat you or your sick child or your family any different...
They are the same solid friend you knew before this crisis...
and the crisis just cemented that.
I recently got thrown for a loop...
A friend of mine, someone I have considered to be very good friend of mine, opened her heart to me about her feeling about Hudson.
I never saw it coming. I don't fully understand it. I am trying.
She reads my blog and I asked for permission to share.
I have changed names to keep it anonymous.
This is the email I received.......
Friend
It is heart breaking for me to know that Hudson's journey has questioned your faith in God. My hope in Hudson and my family having to endure any of this, is that our path would lead others to God. That Hudson brings glory and shows truly how amazing God can be, and is. That others would learn through our journey and how Hudson has actually strengthened my relationship with God.
I have seen the face of God in many situations because of Hudson.
I don't want Hudson or anyone in my family to be looked at and feel pity by others, especially my friends.
That is what I sense from you and your email.
It has taken me 2 years to become a bit stronger in this. I wish Hudson didn't have this incurable disease. I wish I could take it and he could be whole. I cry alot...more than I ever knew possible.
Reality is he is sick. Why? I don't know. A total fluke.
But God makes no mistakes and he is no mistake.
When we spoke last night and we were talking about Jason's premature birth and you talked about the chance that he could have had brain damage, and you said the words..."his life would suck" that hit hard with me. I have been thinking about that all day. You were very lucky Jason turned out healthy, but would you have pitied him if he knew life another way? A brain injury can happen to a perfectly healthy person through an accident. God forbid you would know someone in your life that sustained life altering circumstances later in life...how would you handle that? There are no guarantees in life. We all have to endure hardships in this life. I pray you or nobody I know would have to endure the hardship of having a sick child, it is hardest on the heart of a mother. As a mom we fight for our kids, and love them endlessly no matter what ailments come our way.
And yes, at many times this road has sucked...a lot...but if I allow God to turn it for good as he promises, how can it suck?
He is working through our circumstances...and that doesn't suck...not at all!
To know Hudson is to know a living angel. When I look in his eyes, I see the face of God staring back at me...he has gifted me life lessons that you may never understand.
I feel blessed to be his mom. He is a gift. He is perfect. Maybe not to society's standards...but in my book, he is just as perfect as Julie...he is a sick child but he is perfect.
No he is not running or playing with our kids. He has been cheated out of a "childhood"
but he doesn't know any different...only we do.
Hudson is a great teacher. He is a little lover. He is a fighter. He is strong and mighty...and he has a sermon to preach every day he is here living his life.
I hope one day you can "hear" that sermon, witness his preaching.
I don't think you truly know him. I understand your fears and your not knowing how to handle him. He is just a little baby boy and he needs to be treated with love and understanding and the only way you can do that is by getting to know him. I really think your fear of Hudson has stood in the way to appreciate who he is and getting to know this living angel.
My life has not been easy. I lost my Dad at a very young age, I was mistreated by several step-father's, I had to grow up very fast for many reasons. I get married, have babies and one is catastrophically ill. My husband gets relocated and I am essentially alone, doing it all....alone. I have many reasons to turn my back on God....BUT....I know I am the person I am because Jesus is walking me through all of these situations in my life. I do not have the strength to endure any of this by myself....God sees me through every day, every moment, even when I think I am at my max...he sees me through.
If I didn't have God...pity me.
Don't get me wrong....I have questioned much of why I have had to go through a fraction of what many endure. I don't have answers. I have always put it back on myself....I must deserve this life, I must be a really bad person, I must be a sinner that deserves this sentence....in spite of knowing all this, I also know God does not wish bad on his people. This is not His doing, but the result of a fallen world, and Heaven will be just that...HEAVENLY...and that is where I will be one day...with a whole Hudson, exactly the way God intended.
My world includes some truly amazing parents that have a "Hudson" in their life. There are many, many "Hudson's" out there, and you don't know because you are not in this circle. These people are my life line...they "get it"...they are my heroes!
I don't expect you to get it. You are a friend that just witnesses the pain and suffering I go through having a sick child, you see all the things he is not doing, you see the sadness, and heartache, and I am sure your mommy heart is what aches for me because you can't imagine going through my daily walk.
Trust me....I did not sign up for this. I am not capable.
I am also not worthy to be loved unconditionally the way Hudson loves me.
The way he looks in my eyes with peace and contentment when in my arms.
I don't deserve and am unworthy to be a mother to this living angel.
There are so many gifts he gives me in spite of his illness and because of his illness.
I am coming to realize...in many ways...Hudson has brought me to a deeper relationship with God, He most recently has saved and strengthened my marriage, he has taught his brother and sister to embrace and love those who are sick and are different, he has brought my mom to Jesus, he has brought others in to my life that I consider to be an honor to walk such a path with and who are my personal heroes. He has given me so much clarity.
In 21/2 years, aren't those many gifts to be handed out through such a small boy?
So please....no pity, no guilt....
all I ask is that you don't live with regrets. I would hate that you would regret that you were so caught up in your sadness, guilt and pity, that you never took the time to know the Hudson that I know.
The gift that he is, the sermon that he preaches.
I appreciate your honesty...you know I have always liked that about you.
I hope you can appreciate my honesty too.
Your Friend....Deb
After this email was recieved by my friend we talked...we cried...and I had to abruptly end the conversation as I was late to Hudson's PT appointment.
I am still very shaken by this. One of the reasons I am sharing is because it is my "therapy"
I need to let God take care of this. I feel it is out of my hands.
Amother reason to share is because I never imagined this was how one of my friends, whom I often see and get together with, was feeling this way about HUdson. I wonder if any other friends of mine are holding back feelings, too afraid to share with me.
I have never wanted people to stop coming to me for prayer, or for my shoulder to lean on, or any need a friend provides, because of the fact that I have a sick baby and my plate is somewhat full. I still need to be a friend to others...I am the same friend I was before. I don't want to suck the life out of others with all that is going on in my life, I feel I have always tried to be aware and let others know to come to me...friendship is a 2 way street no matter what the circumstances.
So I am emotionally fried...
this is part of a email after our talk....
I feel as though there has been dirt in a wound and I am in the process of picking it out and healing it. It hurts but it is getting better. I hope you know how much I value you as my friend and the thought of losing our friendship would be so painful. I feel confident that we can move through this and that God is doing a work here in the process. Thanks for being so open to hearing my struggle and being willing to hang in there with me in the process.
ME...
Like I said...
*Things will be fine with me and my friend, and I am glad it is out in the open and dealt with!
Relationships change.
Friendships change.
For those of us who have a sick child, we know the added stress and pressure it can place on a marriage.
The divorce rate is something like 80-90% when a child has a diagnosis.
It can be devastating.
It also can change the dynamics of friendships and relationships...
people who you thought you could lean on.... abandon you
those who you thought couldn't handle your "new normal" become your rock...
strangers on similar paths become your closest friends and family.
For me personally...
I have experienced so many changes with my relationships and friendships with others since Hudson came into our lives as a sick baby.
I said goodbye to a childhood friend. A friend I grew up with, a friend that we dreamed as little girls of moving to CA and raising our kids together and them being best friends like we were. We had always kept in contact no matter where we lived...when I was finishing highschool she was in Arizona, when I was in Chicago she was in Seattle...then finally 12 years ago I move back to Seatlle and we start having babies and would get together occasionally, and I realized we had both changed a lot. Not a bad thing, just we were two totally different people as adults. When Hudson became sick, it became evident to me I did not need the added stress of maintaining a friendship with someone who cared only about themself and I what I could give to them. It was a one-way friendship. She never saw Hudson once he became "ill" she never came to be with me, help me, or be a "shoulder" I had to say good-bye...and I did.
I also had friendships that become null and void once Hudson was sick.
Friends that I saw and spoke to on a weekly basis...that just seemed to disapear once it was evident we had a sick child to care for. I am not sure why this happened. I am not sure if some are just uncomfortable with the fact that our world was rocked to the core, that life took a turn for us, and some friends didn't know what to say or do, so they just "went away." I do think about it though, and wonder. Obviously not the greatest of friends.
Which leads me to this....
you sort of find out in crisis who your "true" friends. There are those who make it very easy to walk away from, and when they have walked away from me...well, I don't need them!
I also had friends through this that have become like a "rock"
They never change
They are their for me...to talk with, lean on, cry with, laugh with...
They don't disappear
They don't treat you or your sick child or your family any different...
They are the same solid friend you knew before this crisis...
and the crisis just cemented that.
I recently got thrown for a loop...
A friend of mine, someone I have considered to be very good friend of mine, opened her heart to me about her feeling about Hudson.
I never saw it coming. I don't fully understand it. I am trying.
She reads my blog and I asked for permission to share.
I have changed names to keep it anonymous.
This is the email I received.......
I hope you had fun at your mom’s tonight. Thanks again for a fun time last night and yummy dinner!!
Today Julie asked a lot about Hudson. She wanted to know when he would grow up and run. I finally “came clean” with her and explained that he is sick (like always sick) and that we don’t know if he will ever run. She had a lot of questions and it was hard for her. Tonight in bath, she was caring for her baby (one that goes in the tub). She was cradling the baby and told me it was Hudson and that he is sick like Miss Devvy’s baby. I prayed for plastic Hudson to be all better. Later I asked if Hudson was ok now and she said “No, he’s still sick”. Sadly, I felt like she got it.
I think I haven’t shared many of my feelings about Hudson with you because I still remember the night at the wine tasting when he kept crying and I just broke down at the injustice of it all. I have been afraid of letting you see how painful his situation is for me. I don’t want to make your burden worse and certainly, I feel kind of silly talking about how his illness affects me who does nothing for him while I watch you suction him, hold his hand through seizures and live with a double shelf of medicines adorning your kitchen counter.
Yet I feel that God is doing some work on my heart regarding this and it is getting more painful in the process. I felt led to share this stuff with you. I realize that you blog about all of your ups and downs regarding his illness and it seems fair to share this stuff with you.
I have had a sort of crisis in faith because of Hudson. I guess the fact that we carried those babies at the same time. Watching my perfect baby girl pass him up and join up with the older kids. Regretting all of the little classes, everything that would have been ours to share with these kids. The guilt I feel every time you ask me about her school, etc. Watching you tear up at that carnival yesterday during his seizure as the other kids ran free in a place made to make kids happy. Yet, can he feel happiness?
The worry I felt when I picked him up yesterday and his cry got worse. Feeling so inept. Regretting making even one moment of his tough little life harder.
The difficulty I have in going to God with the requests of my kids, my family, my self, anyone sick when Hudson is not being healed. Knowing that he committed no sin and was born to this. Knowing that the rest of your life will be hard caring for him or missing him if he goes.
I
I don’t know if any of this makes sense and I pray it doesn’t make things harder because it’s the last thing I’d want is to add to your burden. But, I know we are really close and I felt it was important to share this stuff with you.
Julie is sleeping with plastic Hudson tonight.
I hope the real Hudson feels the love she sends and that I feel for him. Sorry I haven’t been able to express it better. I am so raw about this at times, it is hard for me to get close and not lose it and I haven’t wanted to put that on you.
I am so thankful that you’ve been able to maintain our friendship in spite of having to see Julie develop without Hudson doing the same. I am inspired by your faith and so glad to be your friend.
Love,
My Response........
I read your email and felt sad. I read it again and cried. I read it several times after that and felt the need to respond.It is heart breaking for me to know that Hudson's journey has questioned your faith in God. My hope in Hudson and my family having to endure any of this, is that our path would lead others to God. That Hudson brings glory and shows truly how amazing God can be, and is. That others would learn through our journey and how Hudson has actually strengthened my relationship with God.
I have seen the face of God in many situations because of Hudson.
I don't want Hudson or anyone in my family to be looked at and feel pity by others, especially my friends.
That is what I sense from you and your email.
It has taken me 2 years to become a bit stronger in this. I wish Hudson didn't have this incurable disease. I wish I could take it and he could be whole. I cry alot...more than I ever knew possible.
Reality is he is sick. Why? I don't know. A total fluke.
But God makes no mistakes and he is no mistake.
When we spoke last night and we were talking about Jason's premature birth and you talked about the chance that he could have had brain damage, and you said the words..."his life would suck" that hit hard with me. I have been thinking about that all day. You were very lucky Jason turned out healthy, but would you have pitied him if he knew life another way? A brain injury can happen to a perfectly healthy person through an accident. God forbid you would know someone in your life that sustained life altering circumstances later in life...how would you handle that? There are no guarantees in life. We all have to endure hardships in this life. I pray you or nobody I know would have to endure the hardship of having a sick child, it is hardest on the heart of a mother. As a mom we fight for our kids, and love them endlessly no matter what ailments come our way.
And yes, at many times this road has sucked...a lot...but if I allow God to turn it for good as he promises, how can it suck?
He is working through our circumstances...and that doesn't suck...not at all!
To know Hudson is to know a living angel. When I look in his eyes, I see the face of God staring back at me...he has gifted me life lessons that you may never understand.
I feel blessed to be his mom. He is a gift. He is perfect. Maybe not to society's standards...but in my book, he is just as perfect as Julie...he is a sick child but he is perfect.
No he is not running or playing with our kids. He has been cheated out of a "childhood"
but he doesn't know any different...only we do.
Hudson is a great teacher. He is a little lover. He is a fighter. He is strong and mighty...and he has a sermon to preach every day he is here living his life.
I hope one day you can "hear" that sermon, witness his preaching.
I don't think you truly know him. I understand your fears and your not knowing how to handle him. He is just a little baby boy and he needs to be treated with love and understanding and the only way you can do that is by getting to know him. I really think your fear of Hudson has stood in the way to appreciate who he is and getting to know this living angel.
My life has not been easy. I lost my Dad at a very young age, I was mistreated by several step-father's, I had to grow up very fast for many reasons. I get married, have babies and one is catastrophically ill. My husband gets relocated and I am essentially alone, doing it all....alone. I have many reasons to turn my back on God....BUT....I know I am the person I am because Jesus is walking me through all of these situations in my life. I do not have the strength to endure any of this by myself....God sees me through every day, every moment, even when I think I am at my max...he sees me through.
If I didn't have God...pity me.
Don't get me wrong....I have questioned much of why I have had to go through a fraction of what many endure. I don't have answers. I have always put it back on myself....I must deserve this life, I must be a really bad person, I must be a sinner that deserves this sentence....in spite of knowing all this, I also know God does not wish bad on his people. This is not His doing, but the result of a fallen world, and Heaven will be just that...HEAVENLY...and that is where I will be one day...with a whole Hudson, exactly the way God intended.
My world includes some truly amazing parents that have a "Hudson" in their life. There are many, many "Hudson's" out there, and you don't know because you are not in this circle. These people are my life line...they "get it"...they are my heroes!
I don't expect you to get it. You are a friend that just witnesses the pain and suffering I go through having a sick child, you see all the things he is not doing, you see the sadness, and heartache, and I am sure your mommy heart is what aches for me because you can't imagine going through my daily walk.
Trust me....I did not sign up for this. I am not capable.
I am also not worthy to be loved unconditionally the way Hudson loves me.
The way he looks in my eyes with peace and contentment when in my arms.
I don't deserve and am unworthy to be a mother to this living angel.
There are so many gifts he gives me in spite of his illness and because of his illness.
I am coming to realize...in many ways...Hudson has brought me to a deeper relationship with God, He most recently has saved and strengthened my marriage, he has taught his brother and sister to embrace and love those who are sick and are different, he has brought my mom to Jesus, he has brought others in to my life that I consider to be an honor to walk such a path with and who are my personal heroes. He has given me so much clarity.
In 21/2 years, aren't those many gifts to be handed out through such a small boy?
So please....no pity, no guilt....
all I ask is that you don't live with regrets. I would hate that you would regret that you were so caught up in your sadness, guilt and pity, that you never took the time to know the Hudson that I know.
The gift that he is, the sermon that he preaches.
I appreciate your honesty...you know I have always liked that about you.
I hope you can appreciate my honesty too.
Your Friend....Deb
After this email was recieved by my friend we talked...we cried...and I had to abruptly end the conversation as I was late to Hudson's PT appointment.
I am still very shaken by this. One of the reasons I am sharing is because it is my "therapy"
I need to let God take care of this. I feel it is out of my hands.
Amother reason to share is because I never imagined this was how one of my friends, whom I often see and get together with, was feeling this way about HUdson. I wonder if any other friends of mine are holding back feelings, too afraid to share with me.
I have never wanted people to stop coming to me for prayer, or for my shoulder to lean on, or any need a friend provides, because of the fact that I have a sick baby and my plate is somewhat full. I still need to be a friend to others...I am the same friend I was before. I don't want to suck the life out of others with all that is going on in my life, I feel I have always tried to be aware and let others know to come to me...friendship is a 2 way street no matter what the circumstances.
So I am emotionally fried...
this is part of a email after our talk....
I feel as though there has been dirt in a wound and I am in the process of picking it out and healing it. It hurts but it is getting better. I hope you know how much I value you as my friend and the thought of losing our friendship would be so painful. I feel confident that we can move through this and that God is doing a work here in the process. Thanks for being so open to hearing my struggle and being willing to hang in there with me in the process.
I spent a bunch of time today looking at your blog and those connected to you, the mito awareness video, etc. It was good.
I really felt that God wanted me to open up to you about the journey I am on with this and after our call today, I was worried that I’d blown it with you. Anyway, I love you and hope that I did the right thing. I really regret the pain I caused. I remember when Jason was in the hospital how absorbed I got in the “preemie world” and how no one else really understood our situation. I know I will never really get it the way your IS/mito buddies do. I pray that I can come to know and love Hudson deeper and that this struggle will be a strengthener of faith and friendship in the end.
Yesterday was a very rough, emotional day for me...I spent much of the day in tears.
I feel like I need time with all of this.
I'll be honest...I don't fully understand how Hudson is like an open wound for you. I also don't understand how this doctor you have been talking about has anything to do with me and Hudson.
I have worked so hard trying to get past my feelings of wanting to alienate myself from you because of the pain of seeing Julie and Hudson in one room...I have worked through it for the sake of our friendship, and felt good about getting myself through this painful reality, feeling like I was working through it pretty well.
I have been taken by surprise how you feel about Hudson. I honestly just don't get it.
You are right, I don't need added pain, added tears, added worries. I feel the need to apologize but not even sure why.
Time heals all wounds. I think we both need time to process whatever it is that is going on here. I hope when you have a bit more clarity you can explain all of this better, but for now I will let God do his work on you, and I am going to try and not worry about how Hudson has affected you...I just can't.
Know I am not mad, or in any way ending our friendship....
just confused and need time, and don't really want to talk about it anymore...it's just too much!
I feel like I need time with all of this.
I'll be honest...I don't fully understand how Hudson is like an open wound for you. I also don't understand how this doctor you have been talking about has anything to do with me and Hudson.
I have worked so hard trying to get past my feelings of wanting to alienate myself from you because of the pain of seeing Julie and Hudson in one room...I have worked through it for the sake of our friendship, and felt good about getting myself through this painful reality, feeling like I was working through it pretty well.
I have been taken by surprise how you feel about Hudson. I honestly just don't get it.
You are right, I don't need added pain, added tears, added worries. I feel the need to apologize but not even sure why.
Time heals all wounds. I think we both need time to process whatever it is that is going on here. I hope when you have a bit more clarity you can explain all of this better, but for now I will let God do his work on you, and I am going to try and not worry about how Hudson has affected you...I just can't.
Know I am not mad, or in any way ending our friendship....
just confused and need time, and don't really want to talk about it anymore...it's just too much!
Like I said...
with this post...I let it go...giving it to God to unravel....
I do cherish my friends.
There are friends for a Reason. Friends for a Season. Friends for a Lifetime.
I think when you cross a "bridge" such as I have...
a "bridge" that brings a sick child in your life...
you can never look back....
only ahead.
Some friends chose not to cross that bridge with me.
Some friends crossed that bridge and never looked back.
Some friends are hesitant to cross that bridge, and in a sense "white knuckling" it.
I had no choice...
this bridge brought a new chapter in my life...
I can only move forward
and know that those relationships and friendships God brought into my life for a lifetime will choose to move forward with me.
My husband said it perfectly...
to truly know Hudson is an honor and privilege...he is such a gift!
*Things will be fine with me and my friend, and I am glad it is out in the open and dealt with!
Friday, April 23, 2010
In a "nut-shell"
I am overwhelmed sitting here thinking about updating the past week, so I am going to try and do a super
brief update and just hit on the main events....
First and foremost...
*we got the house!!!! We signed Monday and I flew out that night getting me home Tuesday at 12:30 a.m.
It was bittersweet....I got used to the idea of my husband coming home with me after leaving his job and Vegas behind...but God had other plans...and so after tears shed, coming to grips that life marches on as it has been, we have a vacay home...and it is perfect!
*The day after I flew to Nevada, my mom had Hudson at the Pediatrician. The "gunk" came back!
When I got home, I was shocked at how bad he sounded, but after lots of deep suctioning he sounds better.
Is it possible to get a cold and be on antibiotics? He is still on Augmentin, but he sounds wheezy, coughing and has thick yellowish mucous he is coughing up...AGAIN!!!!
I can only chalk it up as a cold...the Peptamin Jr, seemed like it was making a difference for the better, could it be making him worse??? Any input...greatly appreciated!
*I realized in one year, Hudson's become more medically fragile...his health can deteriorate in hours, and I don't think I will ever be able to leave him for 5 days again...ever...a night, maybe...not for days! Too much responsibility for anyone...not to mention the stress and worry.
*My mom did an amazing job with all my kids...I think she was ready to see me come home and resume my "job" after 5 days! Kudos to you mom!
*I need to get my kids to Vegas...I am praying somehow...by the Grace of God...Hudson will be good to take down from July through August. I can't leave him here with anyone...I can't. To come up with a do-able game plan is my goal over the next few month. I know I will have to drive. I know I will have to have a game plan with Dr. S, I know Hudson has to have a "healthy" streak before leaving.
*Seizures are still there. Some days better than others, but have seen a decrease in tonics, although yesterday he had 4! He is still having I.S., and single spasms...they SUCK!
*My husband and I had a wonderful few days together....falling in love all over again is fun....amazing what distance does to the heart...like I said...bittersweet!
So that is it in a nut-shell....more to come this weekend.....
brief update and just hit on the main events....
First and foremost...
*we got the house!!!! We signed Monday and I flew out that night getting me home Tuesday at 12:30 a.m.
It was bittersweet....I got used to the idea of my husband coming home with me after leaving his job and Vegas behind...but God had other plans...and so after tears shed, coming to grips that life marches on as it has been, we have a vacay home...and it is perfect!
*The day after I flew to Nevada, my mom had Hudson at the Pediatrician. The "gunk" came back!
When I got home, I was shocked at how bad he sounded, but after lots of deep suctioning he sounds better.
Is it possible to get a cold and be on antibiotics? He is still on Augmentin, but he sounds wheezy, coughing and has thick yellowish mucous he is coughing up...AGAIN!!!!
I can only chalk it up as a cold...the Peptamin Jr, seemed like it was making a difference for the better, could it be making him worse??? Any input...greatly appreciated!
*I realized in one year, Hudson's become more medically fragile...his health can deteriorate in hours, and I don't think I will ever be able to leave him for 5 days again...ever...a night, maybe...not for days! Too much responsibility for anyone...not to mention the stress and worry.
*My mom did an amazing job with all my kids...I think she was ready to see me come home and resume my "job" after 5 days! Kudos to you mom!
*I need to get my kids to Vegas...I am praying somehow...by the Grace of God...Hudson will be good to take down from July through August. I can't leave him here with anyone...I can't. To come up with a do-able game plan is my goal over the next few month. I know I will have to drive. I know I will have to have a game plan with Dr. S, I know Hudson has to have a "healthy" streak before leaving.
*Seizures are still there. Some days better than others, but have seen a decrease in tonics, although yesterday he had 4! He is still having I.S., and single spasms...they SUCK!
*My husband and I had a wonderful few days together....falling in love all over again is fun....amazing what distance does to the heart...like I said...bittersweet!
So that is it in a nut-shell....more to come this weekend.....
Friday, April 16, 2010
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...
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...
Tuesday, April 13, 2010
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...
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...
Monday, April 12, 2010
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.
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.
Sunday, April 11, 2010
*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.
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!
Saturday, April 10, 2010
She's With Me
My brother sent me an email with this song he wanted me to hear.
He sent it to me March 8...I just opened it today. He kept asking if I had listened to it and I kept telling him "not yet."
Not yet...because I didn't want to cry, feel sad and emotional...I have plenty of that on a daily basis, don't need to add to that daily dose.
For some reason this evening I finally opened the email and clicked on the link and it was absolutely beautiful...like he told me it was.
Not sure when this came out, or if this is one of those that is passed along and well known in the bloggy world BUT it was new for me and very touching and sadly, the lyrics hit too close to home for my little Hudson.
Below the lyrics is a short background on the story behind the song.
This little girl never got a diagnosis but it really looks like, in my opinion, a strong possibility of Mito disease...I wonder.
The Lyrics;
She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me
I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my week,
Though she can’t speak,
She let’s me know she feels my love when she’s with me
I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me
Collin’s Story:
“She’s With Me” is a tribute to my granddaughter, Haley, very, very special - and very ill with a neurological condition that no one’s been able to diagnose, and it’s regressive … for six years, I’ve been having this in my heart. It’s very hard to write about things like this, because nothing is ever good enough for her, and it’s hard to put into words how you feel.
The idea of “She’s With Me” struck me about a year or so ago. Thinking in this life she can’t do anything for herself. She comes and goes because she’s with me, and then I related it to the after life thinking, well, if I’m lucky enough to ever be standing in front of the Lord or St. Peter … maybe, she’ll be standing there and say, “Well, it’s okay, because he’s with me.”
Collin has been a tireless advocate for Haley and realizes the extraordinary toll that a child’s medical condition and the resulting expenses can place on a family - especially in such a terrible economy. That is why he has joined with OK to raise funds for organizations helping these children and families to be able to get treatment, transportation and housing dictated by often long, expensive hospital stays.
A link for further info and support page.
He sent it to me March 8...I just opened it today. He kept asking if I had listened to it and I kept telling him "not yet."
Not yet...because I didn't want to cry, feel sad and emotional...I have plenty of that on a daily basis, don't need to add to that daily dose.
For some reason this evening I finally opened the email and clicked on the link and it was absolutely beautiful...like he told me it was.
Not sure when this came out, or if this is one of those that is passed along and well known in the bloggy world BUT it was new for me and very touching and sadly, the lyrics hit too close to home for my little Hudson.
Below the lyrics is a short background on the story behind the song.
This little girl never got a diagnosis but it really looks like, in my opinion, a strong possibility of Mito disease...I wonder.
The Lyrics;
She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me
I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my week,
Though she can’t speak,
She let’s me know she feels my love when she’s with me
I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me
Collin’s Story:
“She’s With Me” is a tribute to my granddaughter, Haley, very, very special - and very ill with a neurological condition that no one’s been able to diagnose, and it’s regressive … for six years, I’ve been having this in my heart. It’s very hard to write about things like this, because nothing is ever good enough for her, and it’s hard to put into words how you feel.
The idea of “She’s With Me” struck me about a year or so ago. Thinking in this life she can’t do anything for herself. She comes and goes because she’s with me, and then I related it to the after life thinking, well, if I’m lucky enough to ever be standing in front of the Lord or St. Peter … maybe, she’ll be standing there and say, “Well, it’s okay, because he’s with me.”
Collin has been a tireless advocate for Haley and realizes the extraordinary toll that a child’s medical condition and the resulting expenses can place on a family - especially in such a terrible economy. That is why he has joined with OK to raise funds for organizations helping these children and families to be able to get treatment, transportation and housing dictated by often long, expensive hospital stays.
A link for further info and support page.
Thursday, April 8, 2010
As I sit here...
Hudson sounds like a gurgle-mix master. I just can't believe this never completely goes away.
I know...I have been told he will probably always sound "junky" because of his muscle tone, and the secretions just pool in the back of his throat. I hate hearing it, I hate that he can't breathe simply....and yet his sats never really go down much in the hospital so I know he is getting enough oxygen BUT it is just coming to grips knowing this is his normal...and it is far from normal!
I pleaded my case many times while we sat in the hospital this last go around. I just threw it out there...because nobody has ever come to me with it.....
Could his formula be a part of the problem? Is it possible? Can it hurt to try a simpler formula and see if it helps?
The dieiticaian came in our room minutes before discharge...so I quickly ranted about how I would like to *try* a formula that would be easier on his system...etc, etc. So she gave me a few days worth of a new formula and said try it and see if you notice anything. I wanted to get Hudson as much to a baseline as possible before trying this....I finally decided to try last weekend...and I think it may have helped...but I am not certain....I start questioning...
was I seeing the bubbling around his mouth?
did he sound THIS junky?
was I suctioning as much?
So I called this week and requested more...
because can you really even be certain there is a change after 3 days of trying a new formula?
Right now I think the new formula was helping. I hope when I get the 10 day supply, I will have a better idea.
We are trying Peptamin Jr.(sp?) It is suppose to be pre-digested, easier on the system....really could use some prayer that this gives some relief to the never ending junky battle of Hudson vs. mucuos!
I am also now certain about his sporadic bouts of vomiting. I am convinced it is 100% seizure related. It is always after a very hard tonic...but not after every hard tonic. His breathing gets very weird and his mouth gets stiff...I can't even get the suction catheter in his mouth to try and help with the gurgles...his tongue is in battle as I try to help. If he has this type of seizure and hasn't been fed recently he doesn't vomit, he just goes through the motions. Which leads me to the next.....
wonderful tweak that I made in his daily routine.....
Hudson gets 24 oz. a day...which would consisted of 6-4oz. bottles. A few months ago I was blogging about having to give his last feed around 11:30 and then waiting til sometimes 1 a.m. to make sure he doesn't vomit in his crib...exhausting! Well, I changed it up and it has been heavenly! Now he gets 4- 5oz bottles and 1-4oz. bottle around 8:30-9, and then an hour late I just give him his last 3 meds with water. It has been so nice to eliminate that worry...I sleep knowing he is not going to throw up in his or my sleep. Why didn't I think of this sooner? Oh well...one problem resolved!
Looks like I will be heading to Vegas next week.......
everything is done and the closing is next Thursday. So we are very soon to be owners of a
"vacation home".....
I wish it was as good as it sounds....like we did this by choice....cuz life is just good like that....HA!
I am grateful we are able to purchase this...as we hope regardless of where Paul is working in the future...it will be a *vacation home* some day...for all of us..... and a good investment as well. Again...just stinks that he is "vacationing" there a lot more than we are!
I am probably going to have to leave Wed. night as the closing is set for 11:15 a.m. on Thursday. Paul would really like me to stay until Sunday.
I would too....just really can't expect anyone to watch my kids that long....
even if it is my mom and Fred...I think I will feel to guilty.....sun...palm trees...husband...no kids....
yes I am certain I will feel guilty and feel the need to run back home to my babies so no one feels overwhelmed....
it didn't help that at my mom's, on Easter, Hudson's G-tube button popped right out of his tummy and had to be replaced. I think the new meds are eating away at the balloon...it had several holes, we have never had that happen to a balloon before! There was a bit of panic, and I know it freaked my mom a bit, thinking if this happened while she was alone taking care of him ...I understand...I would never be doing what I am doing, mindlessly, if it weren't for Hudson...did I ever mention I used to be medically challenged?
anyways...back to Vegas and my kids....
I am sure my kids wouldn't mind though....Nanna and Mr. Fred spoils them good....they would probably not be missing me! Not sure how any of this will work...BUT ....I do know I have to go down to sign papers and Paul would really like me to be there and show me our new place.
All I have seen are pics and specs....it is 1600 sq. ft. 3 bedroom plus a loft with a fireplace, 2.5 bath, built in 2007....We think it was the model cuz it has many upgrades such as granite, tile, etc.
Prayers for our week ahead would be greatly appreciated....mainly for Hudson's new formula to make a positive change...and if you feel inclined....prayers that I get some good, relaxing time with my husband!
** I added a mito video on the bottom of my blog...I found it on another blog of a mito mom and it made me cry a river...too many kids suffering like my baby....check it out...not that I want you crying too or anything!**
I know...I have been told he will probably always sound "junky" because of his muscle tone, and the secretions just pool in the back of his throat. I hate hearing it, I hate that he can't breathe simply....and yet his sats never really go down much in the hospital so I know he is getting enough oxygen BUT it is just coming to grips knowing this is his normal...and it is far from normal!
I pleaded my case many times while we sat in the hospital this last go around. I just threw it out there...because nobody has ever come to me with it.....
Could his formula be a part of the problem? Is it possible? Can it hurt to try a simpler formula and see if it helps?
The dieiticaian came in our room minutes before discharge...so I quickly ranted about how I would like to *try* a formula that would be easier on his system...etc, etc. So she gave me a few days worth of a new formula and said try it and see if you notice anything. I wanted to get Hudson as much to a baseline as possible before trying this....I finally decided to try last weekend...and I think it may have helped...but I am not certain....I start questioning...
was I seeing the bubbling around his mouth?
did he sound THIS junky?
was I suctioning as much?
So I called this week and requested more...
because can you really even be certain there is a change after 3 days of trying a new formula?
Right now I think the new formula was helping. I hope when I get the 10 day supply, I will have a better idea.
We are trying Peptamin Jr.(sp?) It is suppose to be pre-digested, easier on the system....really could use some prayer that this gives some relief to the never ending junky battle of Hudson vs. mucuos!
I am also now certain about his sporadic bouts of vomiting. I am convinced it is 100% seizure related. It is always after a very hard tonic...but not after every hard tonic. His breathing gets very weird and his mouth gets stiff...I can't even get the suction catheter in his mouth to try and help with the gurgles...his tongue is in battle as I try to help. If he has this type of seizure and hasn't been fed recently he doesn't vomit, he just goes through the motions. Which leads me to the next.....
wonderful tweak that I made in his daily routine.....
Hudson gets 24 oz. a day...which would consisted of 6-4oz. bottles. A few months ago I was blogging about having to give his last feed around 11:30 and then waiting til sometimes 1 a.m. to make sure he doesn't vomit in his crib...exhausting! Well, I changed it up and it has been heavenly! Now he gets 4- 5oz bottles and 1-4oz. bottle around 8:30-9, and then an hour late I just give him his last 3 meds with water. It has been so nice to eliminate that worry...I sleep knowing he is not going to throw up in his or my sleep. Why didn't I think of this sooner? Oh well...one problem resolved!
Looks like I will be heading to Vegas next week.......
everything is done and the closing is next Thursday. So we are very soon to be owners of a
"vacation home".....
I wish it was as good as it sounds....like we did this by choice....cuz life is just good like that....HA!
I am grateful we are able to purchase this...as we hope regardless of where Paul is working in the future...it will be a *vacation home* some day...for all of us..... and a good investment as well. Again...just stinks that he is "vacationing" there a lot more than we are!
I am probably going to have to leave Wed. night as the closing is set for 11:15 a.m. on Thursday. Paul would really like me to stay until Sunday.
I would too....just really can't expect anyone to watch my kids that long....
even if it is my mom and Fred...I think I will feel to guilty.....sun...palm trees...husband...no kids....
yes I am certain I will feel guilty and feel the need to run back home to my babies so no one feels overwhelmed....
it didn't help that at my mom's, on Easter, Hudson's G-tube button popped right out of his tummy and had to be replaced. I think the new meds are eating away at the balloon...it had several holes, we have never had that happen to a balloon before! There was a bit of panic, and I know it freaked my mom a bit, thinking if this happened while she was alone taking care of him ...I understand...I would never be doing what I am doing, mindlessly, if it weren't for Hudson...did I ever mention I used to be medically challenged?
anyways...back to Vegas and my kids....
I am sure my kids wouldn't mind though....Nanna and Mr. Fred spoils them good....they would probably not be missing me! Not sure how any of this will work...BUT ....I do know I have to go down to sign papers and Paul would really like me to be there and show me our new place.
All I have seen are pics and specs....it is 1600 sq. ft. 3 bedroom plus a loft with a fireplace, 2.5 bath, built in 2007....We think it was the model cuz it has many upgrades such as granite, tile, etc.
Prayers for our week ahead would be greatly appreciated....mainly for Hudson's new formula to make a positive change...and if you feel inclined....prayers that I get some good, relaxing time with my husband!
** I added a mito video on the bottom of my blog...I found it on another blog of a mito mom and it made me cry a river...too many kids suffering like my baby....check it out...not that I want you crying too or anything!**
Monday, April 5, 2010
One day isn't enough!
I didn't think a "quick" visit would be that hard...
but...
it was hard on ALL of us.
I almost think it would have been easier to not see my husband come home for Easter.
I sorta get in a groove when he is not here after a while....
and I am o.k.
until something happens...
like the garage spring springing off it's hinges....
(that is unless Fred comes by to save the day!)
or like tonight....
when I am making a "cute snack" for Hailey's K-class
(I notice at 7 p.m. as Hailey hands me her "friday" folder, which I didn't get before spring break and today is now MONDAY not FRIDAY and I see Austin on the calendar for a "cUte" (long U week) snack!)
Avoiding having to go to the grocery store I grab a cake box and make mini cupcakes with sprinkles and frosting.
As we grab the baking stuff the kitchen cabinet falls off the hinges!
I hate being in this house...alone...when things like this happen.
I got the screwdriver, tried calling my husband...no answer. My mom (?) ...no clue....
I think I said a few choice words under my breath as I was trying to screw the hings back...not happening!
Thankfully my brother rolled into town tonight, and came to my rescue.
I am not a man and I certainly do not operate man tools....period! I am simply no good at it!
I didn't get married to be alone...sometimes it just really blows to be in this situation!
Paul's plane got home an hour late Friday night....bringing him in at 10ish.
By the time we got home it was 11ish and we were all wiped!
Saturday was the token day.
But it wasn't enough!
I just got used to having his arm around me.
Having his hand to hold.
His hand to help :)
A kiss here and there.
His warmth.
snuggle.
My partner.
I am a wife...
besides a mom 24/7....
when he is gone....
I miss being a wife.
Never thought certain things would hit me as they have through the past 2 months.
But I have been his wife for almost 14 years....and we have been together 18.....
and that is almost half my life! (ok...I am 37!)
There were many tears shed at 4ish on Sunday.
I talked to my husband today and we agreed...
no more 1 day-ers....too hard on all of us!
The quickest will be coming home on Thursday night and leaving Monday morning.
That is more bearable.
On another note....
Hudson had his Saneto apt.
Pretty uneventful as I had thought it would be.
An increase in Lamictal over 2 weeks.
A blood draw to bank his DNA....
for some mito-thingy that is in the works and may help with pin-pointing a gene.
I really didn't ask a whole lot of questions....
only 1..........
Do you have miracle in the works for us????
We are waiting.
Which comes on the heels of Hailey's most recent question.....
"Mommy....I have been praying for Jesus to heal Hudson for sooooo long....
why hasn't he answered my prayer?"
I hate for her faith to be or feel questionable.
I ask the same.
I told her that sometimes our prayers don't get answered the way we think they should.
Sometimes God has other plans.
Sometimes we just have to be patient.
Sometimes we need to realize we may not get the answer we want....
sometimes the answer is "No"
Tough stuff.
Why I was chosen for this...
I will never know.
I feel so on the brink of loosing.....
my patience
my mind
my smile
my joy
I told Pam and Dr. Saneto today....
that this life Hudson is living is not living at all.
I feel like he simply exists...
and it kills me...
because I know there is a little boy in there...
I almost imagine himself walking out of his broken body...
stepping out of the seizures...
stepping out of the fog of meds...
I can hear him calling...
"hear I am...this is me"
It is as if he wears a mask..
and he can't slip it off...
not today anyways.
Thankfully we have a busy week ahead.
My brother is here until Thursday.
My mom's birthday is Wednesday.
But right now...
today...
I really miss my husband.
but...
it was hard on ALL of us.
I almost think it would have been easier to not see my husband come home for Easter.
I sorta get in a groove when he is not here after a while....
and I am o.k.
until something happens...
like the garage spring springing off it's hinges....
(that is unless Fred comes by to save the day!)
or like tonight....
when I am making a "cute snack" for Hailey's K-class
(I notice at 7 p.m. as Hailey hands me her "friday" folder, which I didn't get before spring break and today is now MONDAY not FRIDAY and I see Austin on the calendar for a "cUte" (long U week) snack!)
Avoiding having to go to the grocery store I grab a cake box and make mini cupcakes with sprinkles and frosting.
As we grab the baking stuff the kitchen cabinet falls off the hinges!
I hate being in this house...alone...when things like this happen.
I got the screwdriver, tried calling my husband...no answer. My mom (?) ...no clue....
I think I said a few choice words under my breath as I was trying to screw the hings back...not happening!
Thankfully my brother rolled into town tonight, and came to my rescue.
I am not a man and I certainly do not operate man tools....period! I am simply no good at it!
I didn't get married to be alone...sometimes it just really blows to be in this situation!
Paul's plane got home an hour late Friday night....bringing him in at 10ish.
By the time we got home it was 11ish and we were all wiped!
Saturday was the token day.
But it wasn't enough!
I just got used to having his arm around me.
Having his hand to hold.
His hand to help :)
A kiss here and there.
His warmth.
snuggle.
My partner.
I am a wife...
besides a mom 24/7....
when he is gone....
I miss being a wife.
Never thought certain things would hit me as they have through the past 2 months.
But I have been his wife for almost 14 years....and we have been together 18.....
and that is almost half my life! (ok...I am 37!)
There were many tears shed at 4ish on Sunday.
I talked to my husband today and we agreed...
no more 1 day-ers....too hard on all of us!
The quickest will be coming home on Thursday night and leaving Monday morning.
That is more bearable.
On another note....
Hudson had his Saneto apt.
Pretty uneventful as I had thought it would be.
An increase in Lamictal over 2 weeks.
A blood draw to bank his DNA....
for some mito-thingy that is in the works and may help with pin-pointing a gene.
I really didn't ask a whole lot of questions....
only 1..........
Do you have miracle in the works for us????
We are waiting.
Which comes on the heels of Hailey's most recent question.....
"Mommy....I have been praying for Jesus to heal Hudson for sooooo long....
why hasn't he answered my prayer?"
I hate for her faith to be or feel questionable.
I ask the same.
I told her that sometimes our prayers don't get answered the way we think they should.
Sometimes God has other plans.
Sometimes we just have to be patient.
Sometimes we need to realize we may not get the answer we want....
sometimes the answer is "No"
Tough stuff.
Why I was chosen for this...
I will never know.
I feel so on the brink of loosing.....
my patience
my mind
my smile
my joy
I told Pam and Dr. Saneto today....
that this life Hudson is living is not living at all.
I feel like he simply exists...
and it kills me...
because I know there is a little boy in there...
I almost imagine himself walking out of his broken body...
stepping out of the seizures...
stepping out of the fog of meds...
I can hear him calling...
"hear I am...this is me"
It is as if he wears a mask..
and he can't slip it off...
not today anyways.
Thankfully we have a busy week ahead.
My brother is here until Thursday.
My mom's birthday is Wednesday.
But right now...
today...
I really miss my husband.
OUR EASTER.....
(Hudsie...the easter egg!)
The Hunt is on!
Thursday, April 1, 2010
Spring WHAT?
Spring Break is certainly not the term I would use for my week. The kids? yeah, it's their spring break, but we have done pretty much nothing...for many reasons!
I don't want to sit here and complain, but it has been one of those weeks...and no BREAK for me!
Love my kids dearly but having all three home 24/7 and no Daddy walking through the door at 6 p.m....well you get the picture...haven't had a glass of wine since last week, but broke down and bought a bottle today....looks like a glass of vino will be the only break I get in this spring break!
So...
my first gripe is the weather! We have been stuck inside, at home, day after day watching it rain cats and dogs, hail, wind.
Wouldn't be so bad if I could spend money...BUT if all goes through and we get this 2nd home, we have to conservatively watch every dollar we spend...NOT fun! Especially when it is pouring and you've got 3 kids!
The fact the week started with me feeling irritable and edgy, well pretty much snapping and getting irritated with everything and everyone, which is pretty much my kids, cuz we haven't gone anywhere with anyone and haven't done anything with anyone....my poor kids....thank goodness that has passed, if you know what I mean ;)
We thought we would go to Portland...to visit my brother, but it didn't happen. Didn't want to spend the money on gas...yes..... that conservative!
My dear hubby comes home tomorrow.....NIGHT....and leaves Sunday at 6:50 p.m.
so it leaves one (1) full-family day together, Saturday.
For me...it is almost harder...to see him come and go that quickly.
For him...it would be unbearable not to come home for Easter...I understand that....just stinks that I have to deliver him back to the airport Easter Sunday.
This is our life.
Our outings and happening have been few....
I took Hunter to a new *indoor* skatepark that opened up practically across the street from us (but we had to drive because of the rain and hail!)
$ 5.00 for 3 hours of skate boarding! This place was bare bones....no heat, a few chairs and folding tables, and packed with 30+ kids!
(Pardon my blackberry camera quality pics)
The nice thing is they have 2 sections...one for 13 and younger and the other side open to all. The 13 and younger was packed! When we went in, the guy that showed us around was pretty young...in fact they, in my estimation, all seemed like 19 and younger. Anyways, I asked about razors, because Hailey has a 3 wheeled raczor, but she doesn't skateboard, but they only allow boards...but this young guy informs me I am welcome to just drop him off. So I am putting the math together....3 hours for $5....that's cheap babysitting! But I couldn't do it....and anyone who knows me isn't surprised that I was the only parent, sitting there, with a 6 year old and a stroller baby as my son skated for 21/2 hours....among 30+ kids.... I was the only parent!!!!
Most of the kids were 13 and younger ....left!
It was tempting... but no way....no one was manning the door, I saw many characters walk in and out....no way did I feel remotely o.k. leaving my 8 year old for 3 hours...so I froze(brrrrrr..), Hailey colored, Hudson stared....
Hunter was happy!
Other happenings....Fred had day surgery on Wed. so I made a big pot of homemade chicken soup, and Hailey made cards and we made chocolate chip cookies. My mom delivered.
Felt good to finally do something for Fred.
My escape.....this is bad....but I blame my brother.....
I noticed a few days ago we had a "free-view" of showtime and my brother for months has been talking about Dexter. So it was free and I watched.....
the whole 4th season....that's 12 episodes in like 4 days. I put it on when the kids are tuckered out, watching a movie, and I stay up until 1 a.m. watching this sick, twisted, demented show...and I am hooked! (thanks Marc!) So envision the highlight of my gawd-awful spring break watching this twisted show and texting back and forth as my brother and I are watching episode after episode in sync....yes, I admit, I have no life!!!! I am hooked though and not happy about it! Please, somebody out there, tell me your hooked too!?!?!? I am staying up until 1 a.m. people...this is bad! When Hunter said he hasn't spent any time with me because I am always watching Dexter at night, I told him "who is with you ALL day?" thinking.....is it too much too watch a adult show, by myself at 9 p.m., with out kids???? Hunter knows how to get to me, I guess it is good we don't subscribe to showtime!
My garage spring busted today....great! Called Fred.
Speaking of which, Fred has surgery Wed. and plans to come here tomorrow to take my kids out for some spring break fun, and give me time alone with Hudson and go do whatever! I told him not to, but he says he will take them to Chuk E Cheese or bowling...whatever they want...his gift for Easter, or spring break or just to make me sane again! Good ole' Fred!
Hudson....
Well, I thought we had turned a corner Sunday...but really? He STILL sounds junky, I am STILL suctioning, and I wonder if he will ever sound gunk-less! This is never ending.
I am definitely not getting much out of his nose when I deep suction that way...that has cleared up alot, but he just gunks up in the back of his throat so quickly. He is not coughing as much and not spitting out as much, but it is still there, just not as bad.
I also realize I should keep my mouth shut, with any praises and Hudson. I mentioned to someone that Hudson never has those crying sprees he used to have, and what happens? 2 days in a row of hours of crying...loosing my mind kind of crying...the attacker just waiting to get me while I am down...seriously...so I say nothing. Seizures got better, now bad again...really bad....gggrrrrr.
Pam called me.....she called me....I am always calling her....but she called me, to check on Hudson. I told her pulmonary called and scheduled an appointment for Dr. Carter and Dr. Saneto and our apt. wasn't until May 26, and guess what......that was pushed up to Monday, April 4....THIS Monday! Amazing when you work with the source, huh? I pretty much know what will happen this next appointment, but prayers are always appreciated in our upcoming visit.
Lastly....
Wishing all a glorious Easter....I won't be blogging til next week...... I will be soaking up my husband and my kids enjoying their Daddy....and praising God.....Jesus is so awesome....so life- giving......
tomorrow I will go with my kids, before picking up Paul, and reflect on how my sins nailed Jesus to the cross...
and Sunday will celebrate a living, loving, God ....who transforms and gives new life.
HAPPY EASTER!
Love...Deb
******************
HELP....
so I post on how I don't want Hailey to grow up and guess what Hunter discovers?
STARS...2 of them...on our espresso leather sectional!!!!
HAILEY!!!!!!
She denied doing it...but we all know it was her...because she recently discovered how to make a star and there are all of these sticky notes around the house with stars on them...by artist Hailey...so...
does anyone know what to use to get ink out of leather? I googled it and tried toothpaste and vinegar and didn't work....anyone have any suggestions??????
I don't want to sit here and complain, but it has been one of those weeks...and no BREAK for me!
Love my kids dearly but having all three home 24/7 and no Daddy walking through the door at 6 p.m....well you get the picture...haven't had a glass of wine since last week, but broke down and bought a bottle today....looks like a glass of vino will be the only break I get in this spring break!
So...
my first gripe is the weather! We have been stuck inside, at home, day after day watching it rain cats and dogs, hail, wind.
Wouldn't be so bad if I could spend money...BUT if all goes through and we get this 2nd home, we have to conservatively watch every dollar we spend...NOT fun! Especially when it is pouring and you've got 3 kids!
The fact the week started with me feeling irritable and edgy, well pretty much snapping and getting irritated with everything and everyone, which is pretty much my kids, cuz we haven't gone anywhere with anyone and haven't done anything with anyone....my poor kids....thank goodness that has passed, if you know what I mean ;)
We thought we would go to Portland...to visit my brother, but it didn't happen. Didn't want to spend the money on gas...yes..... that conservative!
My dear hubby comes home tomorrow.....NIGHT....and leaves Sunday at 6:50 p.m.
so it leaves one (1) full-family day together, Saturday.
For me...it is almost harder...to see him come and go that quickly.
For him...it would be unbearable not to come home for Easter...I understand that....just stinks that I have to deliver him back to the airport Easter Sunday.
This is our life.
Our outings and happening have been few....
I took Hunter to a new *indoor* skatepark that opened up practically across the street from us (but we had to drive because of the rain and hail!)
$ 5.00 for 3 hours of skate boarding! This place was bare bones....no heat, a few chairs and folding tables, and packed with 30+ kids!
(Pardon my blackberry camera quality pics)
The nice thing is they have 2 sections...one for 13 and younger and the other side open to all. The 13 and younger was packed! When we went in, the guy that showed us around was pretty young...in fact they, in my estimation, all seemed like 19 and younger. Anyways, I asked about razors, because Hailey has a 3 wheeled raczor, but she doesn't skateboard, but they only allow boards...but this young guy informs me I am welcome to just drop him off. So I am putting the math together....3 hours for $5....that's cheap babysitting! But I couldn't do it....and anyone who knows me isn't surprised that I was the only parent, sitting there, with a 6 year old and a stroller baby as my son skated for 21/2 hours....among 30+ kids.... I was the only parent!!!!
Most of the kids were 13 and younger ....left!
It was tempting... but no way....no one was manning the door, I saw many characters walk in and out....no way did I feel remotely o.k. leaving my 8 year old for 3 hours...so I froze(brrrrrr..), Hailey colored, Hudson stared....
Hunter was happy!
Other happenings....Fred had day surgery on Wed. so I made a big pot of homemade chicken soup, and Hailey made cards and we made chocolate chip cookies. My mom delivered.
Felt good to finally do something for Fred.
My escape.....this is bad....but I blame my brother.....
I noticed a few days ago we had a "free-view" of showtime and my brother for months has been talking about Dexter. So it was free and I watched.....
the whole 4th season....that's 12 episodes in like 4 days. I put it on when the kids are tuckered out, watching a movie, and I stay up until 1 a.m. watching this sick, twisted, demented show...and I am hooked! (thanks Marc!) So envision the highlight of my gawd-awful spring break watching this twisted show and texting back and forth as my brother and I are watching episode after episode in sync....yes, I admit, I have no life!!!! I am hooked though and not happy about it! Please, somebody out there, tell me your hooked too!?!?!? I am staying up until 1 a.m. people...this is bad! When Hunter said he hasn't spent any time with me because I am always watching Dexter at night, I told him "who is with you ALL day?" thinking.....is it too much too watch a adult show, by myself at 9 p.m., with out kids???? Hunter knows how to get to me, I guess it is good we don't subscribe to showtime!
My garage spring busted today....great! Called Fred.
Speaking of which, Fred has surgery Wed. and plans to come here tomorrow to take my kids out for some spring break fun, and give me time alone with Hudson and go do whatever! I told him not to, but he says he will take them to Chuk E Cheese or bowling...whatever they want...his gift for Easter, or spring break or just to make me sane again! Good ole' Fred!
Hudson....
Well, I thought we had turned a corner Sunday...but really? He STILL sounds junky, I am STILL suctioning, and I wonder if he will ever sound gunk-less! This is never ending.
I am definitely not getting much out of his nose when I deep suction that way...that has cleared up alot, but he just gunks up in the back of his throat so quickly. He is not coughing as much and not spitting out as much, but it is still there, just not as bad.
I also realize I should keep my mouth shut, with any praises and Hudson. I mentioned to someone that Hudson never has those crying sprees he used to have, and what happens? 2 days in a row of hours of crying...loosing my mind kind of crying...the attacker just waiting to get me while I am down...seriously...so I say nothing. Seizures got better, now bad again...really bad....gggrrrrr.
Pam called me.....she called me....I am always calling her....but she called me, to check on Hudson. I told her pulmonary called and scheduled an appointment for Dr. Carter and Dr. Saneto and our apt. wasn't until May 26, and guess what......that was pushed up to Monday, April 4....THIS Monday! Amazing when you work with the source, huh? I pretty much know what will happen this next appointment, but prayers are always appreciated in our upcoming visit.
Lastly....
Wishing all a glorious Easter....I won't be blogging til next week...... I will be soaking up my husband and my kids enjoying their Daddy....and praising God.....Jesus is so awesome....so life- giving......
tomorrow I will go with my kids, before picking up Paul, and reflect on how my sins nailed Jesus to the cross...
and Sunday will celebrate a living, loving, God ....who transforms and gives new life.
HAPPY EASTER!
Love...Deb
******************
HELP....
so I post on how I don't want Hailey to grow up and guess what Hunter discovers?
STARS...2 of them...on our espresso leather sectional!!!!
HAILEY!!!!!!
She denied doing it...but we all know it was her...because she recently discovered how to make a star and there are all of these sticky notes around the house with stars on them...by artist Hailey...so...
does anyone know what to use to get ink out of leather? I googled it and tried toothpaste and vinegar and didn't work....anyone have any suggestions??????
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Hudson Tyler
Our sweet angel!