My head and heart really are not into this blog lately, but I felt I owed it to my faithful friends to at least let you know we are o.k.
If I am not present here, you now know I am not lost, just not feeling like coming here lately.
This seems to happen in seasons for me. I do need prayer, personally...God knows what you don't and I trust in Him and his faithfulness and direction.
Hudson needs your prayers as well...it's been a month of sickness, 2 rounds of antibiotics, a trip to the E.R., and today, once again, a few days after being off the antibiotics, his fever is back. He is soaking his neck and collar with goooo....all the time, all day. Today he has already had 5 tonic seizures...another indicator he is fighting, again.
All you can do for us is pray...
Sunday, October 23, 2011
Friday, October 14, 2011
Thursday, October 13, 2011
Sick ...antibiotics....again!
Hudson is having some rough days.
Not sure if it's the same crud he had a few weeks ago and never fully got out of his system or if this is something new
Its the same old thing.....
Fever started Sunday with lots of coughing and lethargy. My mom reminded me of the antibiotic I had on hand from L.V. so I instantly got it and started him up on it as I only had used a few days of the 14 day rx. The fever never came back but oh my gosh.....
He is so gunky.... Lethargic.....
I'm worried if this doesn't clear up or the fever comes back after this round of antibiotics, we will be bound for the hospital.
Can't believe this is only the beginning of the season and he has been sick so much. You would not believe the amount of secretions draining out his little mouth....it is just ridiculous! I can't give him the Glycopyrolate for secretions when he is sick like this because of the volume...it just gets too thick and hard for him to handle. So his shirts are soaked around the collar these days.
Seizures remain....but grateful they are staying small in numbers, 3-5 a day. Wish it was none.
He sounds horrible but for the most part the oximiter shows his sats in the low to mid 90's....I guess I just have to sit and wait to see if this resolves itself this time around.
It's been a rough week for me... With Hudson sick, I can't take him to the Y, so no working out this week which makes me feel sluggish and yuck!
I'm just concerned about H....As always, he is in need of prayer.
Not sure if it's the same crud he had a few weeks ago and never fully got out of his system or if this is something new
Its the same old thing.....
Fever started Sunday with lots of coughing and lethargy. My mom reminded me of the antibiotic I had on hand from L.V. so I instantly got it and started him up on it as I only had used a few days of the 14 day rx. The fever never came back but oh my gosh.....
He is so gunky.... Lethargic.....
I'm worried if this doesn't clear up or the fever comes back after this round of antibiotics, we will be bound for the hospital.
Can't believe this is only the beginning of the season and he has been sick so much. You would not believe the amount of secretions draining out his little mouth....it is just ridiculous! I can't give him the Glycopyrolate for secretions when he is sick like this because of the volume...it just gets too thick and hard for him to handle. So his shirts are soaked around the collar these days.
Seizures remain....but grateful they are staying small in numbers, 3-5 a day. Wish it was none.
He sounds horrible but for the most part the oximiter shows his sats in the low to mid 90's....I guess I just have to sit and wait to see if this resolves itself this time around.
It's been a rough week for me... With Hudson sick, I can't take him to the Y, so no working out this week which makes me feel sluggish and yuck!
I'm just concerned about H....As always, he is in need of prayer.
Thursday, October 6, 2011
Prayers needed...(Saturday update...)
Our sweet friend Talon is in need of your prayers. He has been in status epilepticus and several meds tried have failed to stop this constant state of seizures.
Please lift this family and Talon in your prayers....wisdom for his doctors, and for this seizure state to stop so his body can rest and regain strength.
You can visit him and leave words of encouragement on his amazing moms blog....
http://tallysfightwithmito.blogspot.com
Or just find it on my blog list on the side bar.
************
10/8/11
My heart is aching for Talon and his family....
Your prayers are still needed as they are now putting him on a ventilator.
Thanks to all who are praying for this little soldier and their family...they are relying on prayer and many of us know that's everything in these scary times...
Please lift this family and Talon in your prayers....wisdom for his doctors, and for this seizure state to stop so his body can rest and regain strength.
You can visit him and leave words of encouragement on his amazing moms blog....
http://tallysfightwithmito.blogspot.com
Or just find it on my blog list on the side bar.
************
10/8/11
My heart is aching for Talon and his family....
Your prayers are still needed as they are now putting him on a ventilator.
Thanks to all who are praying for this little soldier and their family...they are relying on prayer and many of us know that's everything in these scary times...
Tuesday, October 4, 2011
Friends
There is one main direction I would like to see this post go in....
But I can feel it may go into 2 different directions.
First and foremost...I have some AMAZING friends...
But before I go into that, I want to talk about friendship in general...
I guess part 1 of this 2 part post...
Friendships in my life have evolved so much from the time I was a little girl til now.
Growing up I had my neighbor friend, who was almost like a sister and we played and were friends for most of the past 30 something years.
In grade school I had my "group" of friends....
There were those moments when I was young, and just cared about being " popular" and having a ton of friends...didn't matter if there was substance, it was just important to be popular, be liked, feel important, and in friendship with many...
When I got out of high school, I remember being so excited to go to college and meet all new friends, a part of turning that chapter in my life came new friends.
I was a "party" girl, went to lots of parties, and attracted friends who liked the same.
Once I was out in the working world....I had more male friends than female. I had 2 really good female friends in Chicago who I would go out with after work, or on weekends.
Once I got married, moved back to WA, and had kids, a whole other group of friends formed...my "mom" friends...
All in all, I can say friendships throughout my life have come and gone. Season of friendships, if you will...and today friendship has a completely different meaning to me than it did for most of my 3* years.
There is one pivotal moment in my life where friendship took on a whole new meaning...
My third child was born, my life took a turn that I could never prepare for, I began to look at things in a whole new light...once the dust settled.
My time was no longer mine. Not in a way a mom looses herself or her time to her kids, but in a way having a very sick child consumes all your time and energy. It is completely different, and only by living in my shoes you would know what I mean...
Today I am very aware of where my time and energy goes. Outside of my family, I give what I am able to where I am most invested. I don't have time to waste on being nice and having small talk with acquaintances. I really don't care about being the most popular or having truck loads of friends...it is just not important to me.
I have realized having a 30 some odd year friendship with a childhood friend means nothing if you grow apart, have nothing in common by adulthood, and it sucks the life out of you.
I have realized I am rich with a few friends who will walk through the grit of life with me as I will with them...as well as rejoice in those moments of joy in life.
Another important part of my friendships today centers on faith in Jesus.
I have found my friendships and relationships in general, are most successful when Christ is the center....it's that foundation of building something on a rock vs. sand.
Then there is THIS world of friendship...
the blogging friends who do live in my shoes, who "get it" and we all know this takes time and energy.. and reading and praying for all of our friends who are living a parallel life to ours...it is so important to me to maintain those friendships...they have become a life line that gets me through some of the darkest,roughest patches of Hudson and all the pain.
I am not saying I am "right" in how I view friendships...
I am certain I am "short" with some acquaintances, because I don't want to waste my time on "small talk".... I don't care about being friends with everyone in my kids classes...I may come across aloof because of it. I am certain typical moms don't "get" my world, or how difficult things can be....I hate being pitied....HATE it! So maybe I am now difficult to be friends with because of my circumstances....
What I am certain of....
Those who I do carve out time and energy for....
I Love and adore, and I am so grateful for these friendships.
Which comes to part 2 of this post...
My dear, sweet friends....who happen to be neighbors....who happen to be my brother and sister in Christ...
A 14 year friendship....we have walked, talked, cried, drank coffee, partied together, movie nights, dinners...you name it.
They have been through my pregnancies, kids birthday parties, holidays...
And now this....
They own a coffee shop here in town...
During Mitochondrial Awareness Week, Shannon made the first flyer. It talks about what Mito is and how it affects Hudson...a very abbreviated version.
The following week, she posted flyer #2....allowing people to help through donations, and then by carving October 4, as the day they would take a portion of profits from all drink sales and sandwich sales, and put it towards the UMDF as well.
Isn't that wonderful?
What is even more amazing about my dear friends, is that they have had their share of pain in the past year. Danny has been out of work for almost a year....his dad has been really, really sick,they have fears,worries, and are stressed as the coffee shop can't sustain them which can lead to some really difficult decisions...
And yet in spite of all the crap they are going through...they are on mission to help Hudson, to raise money not for their survival...
But for his survival.....I find that amazing, jaw dropping, and so incredibly selfless and loving.
I am proud to say...
These friends of mine raised $416.04!!!!!
$416.04 towards finding a cure for Hudson and the mito world...
The money will be donated to the UMDF in Hudson's name...that # may grow as they will continue to take donations through the rest of the week.
How cool are they? How lucky I am to call them my friends!!!
The craziest part...they have more up their sleeve for Hudson and the mito world, but I am not allowed to share just yet...
But I can feel it may go into 2 different directions.
First and foremost...I have some AMAZING friends...
But before I go into that, I want to talk about friendship in general...
I guess part 1 of this 2 part post...
Friendships in my life have evolved so much from the time I was a little girl til now.
Growing up I had my neighbor friend, who was almost like a sister and we played and were friends for most of the past 30 something years.
In grade school I had my "group" of friends....
There were those moments when I was young, and just cared about being " popular" and having a ton of friends...didn't matter if there was substance, it was just important to be popular, be liked, feel important, and in friendship with many...
When I got out of high school, I remember being so excited to go to college and meet all new friends, a part of turning that chapter in my life came new friends.
I was a "party" girl, went to lots of parties, and attracted friends who liked the same.
Once I was out in the working world....I had more male friends than female. I had 2 really good female friends in Chicago who I would go out with after work, or on weekends.
Once I got married, moved back to WA, and had kids, a whole other group of friends formed...my "mom" friends...
All in all, I can say friendships throughout my life have come and gone. Season of friendships, if you will...and today friendship has a completely different meaning to me than it did for most of my 3* years.
There is one pivotal moment in my life where friendship took on a whole new meaning...
My third child was born, my life took a turn that I could never prepare for, I began to look at things in a whole new light...once the dust settled.
My time was no longer mine. Not in a way a mom looses herself or her time to her kids, but in a way having a very sick child consumes all your time and energy. It is completely different, and only by living in my shoes you would know what I mean...
Today I am very aware of where my time and energy goes. Outside of my family, I give what I am able to where I am most invested. I don't have time to waste on being nice and having small talk with acquaintances. I really don't care about being the most popular or having truck loads of friends...it is just not important to me.
I have realized having a 30 some odd year friendship with a childhood friend means nothing if you grow apart, have nothing in common by adulthood, and it sucks the life out of you.
I have realized I am rich with a few friends who will walk through the grit of life with me as I will with them...as well as rejoice in those moments of joy in life.
Another important part of my friendships today centers on faith in Jesus.
I have found my friendships and relationships in general, are most successful when Christ is the center....it's that foundation of building something on a rock vs. sand.
Then there is THIS world of friendship...
the blogging friends who do live in my shoes, who "get it" and we all know this takes time and energy.. and reading and praying for all of our friends who are living a parallel life to ours...it is so important to me to maintain those friendships...they have become a life line that gets me through some of the darkest,roughest patches of Hudson and all the pain.
I am not saying I am "right" in how I view friendships...
I am certain I am "short" with some acquaintances, because I don't want to waste my time on "small talk".... I don't care about being friends with everyone in my kids classes...I may come across aloof because of it. I am certain typical moms don't "get" my world, or how difficult things can be....I hate being pitied....HATE it! So maybe I am now difficult to be friends with because of my circumstances....
What I am certain of....
Those who I do carve out time and energy for....
I Love and adore, and I am so grateful for these friendships.
Which comes to part 2 of this post...
My dear, sweet friends....who happen to be neighbors....who happen to be my brother and sister in Christ...
A 14 year friendship....we have walked, talked, cried, drank coffee, partied together, movie nights, dinners...you name it.
They have been through my pregnancies, kids birthday parties, holidays...
And now this....
They own a coffee shop here in town...
During Mitochondrial Awareness Week, Shannon made the first flyer. It talks about what Mito is and how it affects Hudson...a very abbreviated version.
The following week, she posted flyer #2....allowing people to help through donations, and then by carving October 4, as the day they would take a portion of profits from all drink sales and sandwich sales, and put it towards the UMDF as well.
Isn't that wonderful?
What is even more amazing about my dear friends, is that they have had their share of pain in the past year. Danny has been out of work for almost a year....his dad has been really, really sick,they have fears,worries, and are stressed as the coffee shop can't sustain them which can lead to some really difficult decisions...
And yet in spite of all the crap they are going through...they are on mission to help Hudson, to raise money not for their survival...
But for his survival.....I find that amazing, jaw dropping, and so incredibly selfless and loving.
I am proud to say...
These friends of mine raised $416.04!!!!!
$416.04 towards finding a cure for Hudson and the mito world...
The money will be donated to the UMDF in Hudson's name...that # may grow as they will continue to take donations through the rest of the week.
How cool are they? How lucky I am to call them my friends!!!
The craziest part...they have more up their sleeve for Hudson and the mito world, but I am not allowed to share just yet...
Sunday, October 2, 2011
A weekend full of blessings...
Hailey playing teacher in H's new bed
Trying out his new bed after we got it all set up
I have had this on my mind quite a bit lately...
Thinking about the transition from crib to bed. There are so many factors to consider when transitioning Hudson out of anything....this transition I knew would cost money, would also be hard on me physically...because my plan was to put a matress on the floor...eventually.
But I have people all around me, who truly care about Hudson and I, and our well being. I know this transition would be brutal on my back, having to lift him from the floor level. Hudson's clinic P.T. is always looking out for me and H...he knew a gal that was getting rid of 2
Sleep Safe Beds...he gave me her phone number and told me to call her and explain my situation. We talked a while and by the end our call,She blessed me by giving me this bed for Hudson! I love it! We got it Saturday and Fred put it together Sunday...tonight is his first night in his new big boy bed. I can't believe what a relief it is on not only a financial end, but for his safety and the health of my back.
It is a twin size bed...I can lay with him,there are railings that swing up to enclose him for safety. Hailey has already crawled in to be teacher and play on the iPad with him....I can't thank Marcy enough for gifting this to us!
Saturday night I had the best date EVER! My Hunter and I went out...just the two of us...I adore this kid and absolutely love spending time with him.
I got to take him to his very first concert!
We saw Casting Crowns with Sanctus Real and The Afters. So amazing to spend that kind of time with my son....fantastic music and worshiping Jesus....I am certain it will be in his (and my) memory bank forever!
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Hudson Tyler
Our sweet angel!