*UPDATE RE. POST BELOW*
No person this sleep deprived should have to jump hoops like I have to get a stinking med!
I have talked to Pam at least 5 times, the pharmacy 3 times, and my insurance company. Bottom line, there was a 48 hour authorization because this med is not given to children under 7.
Thanks to Pam and Dr. S and my many phone calls it is done...almost...I have to pick it up tonight!
We are going to try Risperidone. Anyone out there use this for sleep? Were starting off at a very low dose, because it can cause vomiting (NOOOOO!)and as I was told, " it is not a simple drug" so....1/4ml for 4 days, then 1/2 ml...goodness I hope this works!
I am looking for Hudson, has anyone seen him?????
What happened to my Hudson? The little boy who sleeps at night, rarely keeping his mom awake? I am going insane with this new Hudson....this Hudson that is in a pattern for a month now of staying awake ALL night and sleeping ALL day....
Last night was one of those nights. He slept the night before, so he woke yesterday at 12 noon. He was up all day and I was hopeful he would sleep another solid night. By 9:30 I fed and gave him his meds....at 11 he was still awake, but quiet in my bed. I was exhausted so I put him I his crib. Put his cpap on and was hoping he'd sleep. An hour later I heard screaming. Not a cry scream, just an anwry, trying to be vocal scream. I took his mask off and figured I'd let him fall asleep without it, then put it on later if I was awake. Needless to say he was awake "screaming" until 5 a.m.!!! It is like he is in this weird zone and it takes sunrise before he snaps out of it! Ugh! Unfortunately this has been a pattern for a while now. When the kids were still on break, it was somewhat bare able because I could stay in bed, but now that they are back in school....I am dying. I am sure my fuse is short...I am sure this is not good for me, a month of this crazy sleep pattern. During the day, he is comatized....seriously....I take him out and he sleeps through it all! Saturday we went to a blackberry festival...loud music, hundreds of people, hot day....slept through it all! I think onlookers thought we were abusing him...the kids were slapping his cheeks, I am scratching the bottom of his feet...we even tried cold water...nothing!!!
He seems to do about 2 days in a row of no sleep at night/sleep all day, then 1 night sleep through the night (or he is up and at that point I have died in my sleep and no longer hear him!! Ok a little dramatic, but that's how it feels!)
It is so hard single parenting Hudson at times...for 4 years I have taken it ALL on. I gladly take it all on...I don't know it any other way, but I imagine sharing it with a spouse who also gladly endures and shares these times would be a huge help,and keep the sanity in check.
I have no one to do " shifts" ....there is no one to share the responsibility or the craziness having a sick child brings. It is all on my shoulders, and although I adore him, it is exhausting, stressful, and sometimes feels like too much for one person to bare. I find myself reminding myself of those who have lost their child to this disease, they probably wish they would hear the sound of their little ones voice keeping them up all night...so I then feel ashamed and grateful all at once. I try to keep thing in perspective, sometimes it is hard to do on little sleep. I have to keep up with the demands of not only Hudson, but my other 2... Now school and homework (yes, they already have homework!)
Sometimes the best medicine for me is a good cry...at 3 a.m. this morning, as I lye in bed, after getting up for the umpteenth time, I just shed some tears, praying out loud in frustration and exhaustion.
I guess to those who read my blog and also have a sick child, I want you to walk away with this....if you have a spouse that shares the burden as well as the joys of parenting a s.n. child, be thankful. A tiny part of me envies you, but I am mostly grateful you don't have to take it all on by yourself. Loosing your mind all by yourself....not fun!! Trust me.
So....as I type, Mr. H man is snoozing away. First thing after dropping kids to school was a call to mito nurse. She returned my call right away laughing...In my message I told her I was ready for some "heavy duty medication" forget the melatonin, we need the " big guns" now!
She knows how anti-med I am...I am always looking to wean Hudson off of one of his bazillion drugs he is on, and now here I am begging for something to knock him out!!!
I am waiting for her call...she is talking to Dr. S. about which "gun" we will use.
Wednesday, September 7, 2011
Friday, September 2, 2011
A video
Hudson has been twitching a lot the last 2 days, so I was trying to catch it for our upcoming neurology appointment. What I got instead was a spasms. A mild single spasm....hate them...the tonic ones are much more intense, but he occasionally has these as well. I didn't know *infantile* spasms would continue at age 4.
I also wanted to note his hands...notice how spotty and purple they are...his feet get this way too, and they are always cold when like this. :(
Wish it was a " happy" video to share...something he is doing, other than having seizures.
Thursday, September 1, 2011
Choking back the tears
Wednesday was one of those days...
Circumstances that evoke the welling of tears, that I seem to, for the most part, choke down.
Wednesday was Hunter and Hailey 's first day of school.
They were so incredibly ready to go back to school...in fact they were up all through the night and early, really early in the morning, all ready to throw their good old uniform on and head out the door. Now, tradition in our home, like many, is pictures taken at home outside before school and pictures taken at their desk in the classroom. I also like to gel Hunters hair a little and Hailey 's hair-doo is pretty much always mine daily, so she is used to that...although she has her requests and opinions!
Hailey was very cooperative....Hunter on the other hand was.....hesitant.
First thing he asked me that morning was....the hair...." do you have to gel it mom?"
After much coaxing and convincing him if he didn't like my gel job, he could change it, he allowed me to go at it. The end response was " I look gooood!" Lol
Pictures at the house...no problem...willing participants.
We took Hailey in her class first. She gladly took pictures inside the classroom.
Once she was settled, Hunters turn. The bell had just rung...most of the kids were seated, I and one other mom were walking in the class. I whipped out my camera, and Hunter instantly told me "no pictures mom " .....muttered under his breath. I snapped away...he was a tiny bit mortified, sorta. Not sure if it was the pics, or the kiss on the cheek I planted on him before I took off. (later that day he told me it was ok, the other moms did the same thing)
This has never been an issue...ever! Sadly, I know....he is growing up. My yearly back to school traditions just aren't "so cool" anymore...is it so bad I want to preserve these memories? I know he will be happy 20 years from now to have these...but how do I convince him that today? He is my baby...I hate that he's putting the breaks on these things :( makes this mom sad.
Like I said, I took some great pics. Unfortunately, I can't upload them because my home computer is pretty much fried. So, I will share a few mobile pics...
With the new school year beginning, I decided I was going to start getting up to the YMCA with Hudson. I am so tired of having to depend on someone in order to get 1 hour to myself at the gym. I am so tired of worrying what others think if he is parked next to me...just figured I'd have the " I don't care" attitude and do it for me! So that's exactly what I did. Hudson was awake but sleepy and very chill. Found my machine and parked him. Started my workout... 5 minutes into it, a Y worker comes up to me and informs me that strollers/children are no longer allowed on the cardio floor. I could feel my voice crackle as I told her he can't be in the nursery...that he is disabled and has seizures. I told her if he couldnt be with me than I would have to cancel my membership because I have no other way to be there on a regular basis. She left me working out and said she would speak to her supervisor. I felt shakey, and upset, but kept with my workout. She kept circling the floor throughout my workout. I wondered if she was watching Hudson..his behavior...or just allowing me to work out with him out of pity.
When I finished, she walked up to me...right away I asked her if that would be my last time able to have him next to me. She explained out of safety due to weights and the machines, it was a new policy. She said they would love to have Hudson in the nursery in spite of his disabilities...his seizures...she introduced me to the supervisor and said they could keep him in his chair in the baby area, where they are too small to touch Hudson, and really aren't mobile. My voice quivered as I explained that " day care" environment is something I avoid at all costs. I was teary eyed as she explained I deserve to work out, and Hudson will be well taken care of with individual care as long as he is there. They will provide a walkie talkie so they could instantly reach me if need be. I felt humbled by the " help" and sad as I watched all the little ones, younger than Hudson, running around playing. So often I think I am over it, in those circumstances of seeing healthy toddlers running and playing, and then something like this happens...I get flushed, nervous, sad....I found myself not really looking at all the kids... It's a mix of emotions only a s.n. Mom could know. Their is still that ache, in spite of acceptance, wanting Hudson to be free of this disease and be healthy and "normal."
They gave me a discount on the cost of childcare as well, which was nice. By the end of the whole process I could feel the tears well up, and one or two dropped on my cheek. I was embarrassed that I was feeling so emotional about the whole situation. In the end I decided I would let Hudson reside their for my well being of a 1 hour-ish workout.
Am I being selfish?
Should I feel the guilt?
He's like a limb...I go nowhere without him...I do nothing without him...he is only cared for by my mom outside of me.
I think a huge part of my emotional choke back, was due to the fact that the "typical world" was willing to accept him just like all children are accepted. That is a rareity in my world. So it's this weird feeling of uncertainy leaving him in that environment, mixed with a feeling of gratitude that they are willing to accept him so I can do something for me...any day...at any time ....that works for me!
I really took it for granted p.h. (pre-Hudson) running into the gym and dumping the kids...I didn't realize what a luxury it was to not have to think twice about going to work out and what I would do with the kids....Hudson has, like so many things in my life, opened my eyes wide to what so many take for granted. Such simple things...but for a mom like me, simple has become complicated, exhausting, non-existent. Nothing is "simple" anymore....but I guess in return, I am learning some life lessons that so many never will...Hudson is a great teacher.
I will confess....
today I did not take Hudson. I dropped him with my mom. She offered...and I will avoid the environment of Hudson + kids if I can. Besides....it was sooooo nice to get out of my car and simply walk in the gym...walk up the stairs and not take the elevator...
right to my machine...it was so easy, so very simple.
Circumstances that evoke the welling of tears, that I seem to, for the most part, choke down.
Wednesday was Hunter and Hailey 's first day of school.
They were so incredibly ready to go back to school...in fact they were up all through the night and early, really early in the morning, all ready to throw their good old uniform on and head out the door. Now, tradition in our home, like many, is pictures taken at home outside before school and pictures taken at their desk in the classroom. I also like to gel Hunters hair a little and Hailey 's hair-doo is pretty much always mine daily, so she is used to that...although she has her requests and opinions!
Hailey was very cooperative....Hunter on the other hand was.....hesitant.
First thing he asked me that morning was....the hair...." do you have to gel it mom?"
After much coaxing and convincing him if he didn't like my gel job, he could change it, he allowed me to go at it. The end response was " I look gooood!" Lol
Pictures at the house...no problem...willing participants.
We took Hailey in her class first. She gladly took pictures inside the classroom.
Once she was settled, Hunters turn. The bell had just rung...most of the kids were seated, I and one other mom were walking in the class. I whipped out my camera, and Hunter instantly told me "no pictures mom " .....muttered under his breath. I snapped away...he was a tiny bit mortified, sorta. Not sure if it was the pics, or the kiss on the cheek I planted on him before I took off. (later that day he told me it was ok, the other moms did the same thing)
This has never been an issue...ever! Sadly, I know....he is growing up. My yearly back to school traditions just aren't "so cool" anymore...is it so bad I want to preserve these memories? I know he will be happy 20 years from now to have these...but how do I convince him that today? He is my baby...I hate that he's putting the breaks on these things :( makes this mom sad.
Like I said, I took some great pics. Unfortunately, I can't upload them because my home computer is pretty much fried. So, I will share a few mobile pics...
With the new school year beginning, I decided I was going to start getting up to the YMCA with Hudson. I am so tired of having to depend on someone in order to get 1 hour to myself at the gym. I am so tired of worrying what others think if he is parked next to me...just figured I'd have the " I don't care" attitude and do it for me! So that's exactly what I did. Hudson was awake but sleepy and very chill. Found my machine and parked him. Started my workout... 5 minutes into it, a Y worker comes up to me and informs me that strollers/children are no longer allowed on the cardio floor. I could feel my voice crackle as I told her he can't be in the nursery...that he is disabled and has seizures. I told her if he couldnt be with me than I would have to cancel my membership because I have no other way to be there on a regular basis. She left me working out and said she would speak to her supervisor. I felt shakey, and upset, but kept with my workout. She kept circling the floor throughout my workout. I wondered if she was watching Hudson..his behavior...or just allowing me to work out with him out of pity.
When I finished, she walked up to me...right away I asked her if that would be my last time able to have him next to me. She explained out of safety due to weights and the machines, it was a new policy. She said they would love to have Hudson in the nursery in spite of his disabilities...his seizures...she introduced me to the supervisor and said they could keep him in his chair in the baby area, where they are too small to touch Hudson, and really aren't mobile. My voice quivered as I explained that " day care" environment is something I avoid at all costs. I was teary eyed as she explained I deserve to work out, and Hudson will be well taken care of with individual care as long as he is there. They will provide a walkie talkie so they could instantly reach me if need be. I felt humbled by the " help" and sad as I watched all the little ones, younger than Hudson, running around playing. So often I think I am over it, in those circumstances of seeing healthy toddlers running and playing, and then something like this happens...I get flushed, nervous, sad....I found myself not really looking at all the kids... It's a mix of emotions only a s.n. Mom could know. Their is still that ache, in spite of acceptance, wanting Hudson to be free of this disease and be healthy and "normal."
They gave me a discount on the cost of childcare as well, which was nice. By the end of the whole process I could feel the tears well up, and one or two dropped on my cheek. I was embarrassed that I was feeling so emotional about the whole situation. In the end I decided I would let Hudson reside their for my well being of a 1 hour-ish workout.
Am I being selfish?
Should I feel the guilt?
He's like a limb...I go nowhere without him...I do nothing without him...he is only cared for by my mom outside of me.
I think a huge part of my emotional choke back, was due to the fact that the "typical world" was willing to accept him just like all children are accepted. That is a rareity in my world. So it's this weird feeling of uncertainy leaving him in that environment, mixed with a feeling of gratitude that they are willing to accept him so I can do something for me...any day...at any time ....that works for me!
I really took it for granted p.h. (pre-Hudson) running into the gym and dumping the kids...I didn't realize what a luxury it was to not have to think twice about going to work out and what I would do with the kids....Hudson has, like so many things in my life, opened my eyes wide to what so many take for granted. Such simple things...but for a mom like me, simple has become complicated, exhausting, non-existent. Nothing is "simple" anymore....but I guess in return, I am learning some life lessons that so many never will...Hudson is a great teacher.
I will confess....
today I did not take Hudson. I dropped him with my mom. She offered...and I will avoid the environment of Hudson + kids if I can. Besides....it was sooooo nice to get out of my car and simply walk in the gym...walk up the stairs and not take the elevator...
right to my machine...it was so easy, so very simple.
Thursday, August 25, 2011
Where have I/we been???
Adjusting to all *new* things medical....
Brought oxygen in home with a tank and air converter
Took oxygen tank and converter back after 1 week
brought in a pulse oximiter to use as needed
Changed cpap masks due to leakage
It took about 2 weeks after coming home from the hospital where I could feel comfortable to sleep at night without constantly checking on him...Hudson has been a complete angel adapting to all this.
Picnicking......
Went to the annual mito picnic!
 |
| Hudson and Cody (my dear friend Shawna's son) |
First time for us attending the picnic...
met up with friends, met new friends, met Facebook friends!
Nurturing to the soul....with a side of slightly painful.
 | |||
| Mito kids and their families. I am sure you can spot us with the stroller. |
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| Mito kids and some siblings/care-givers |
Celebrating.....
 |
| I am LOL cuz I just realized Hunter's wearing Christmas in August...FLANNEL no less!!!! |
My oldest kiddo...whom I am so proud of.
The sweetest boy on earth...
the coolest...most loving kid who has the hugest heart for Jesus..
My Hunter turned 10!
 |
| my birthday boy |
 |
| My adorable 3H's! |
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| Stumbled across this scene...Hunter helping our 4 year old friend with her shoes/laces. That is my *sweet* boy!! |
Garages and yard (hate being a "guy"....but love the results!)
Redecorating...
Hunter and Hailey's room...
New furniture...t.v....a blue ray! BIG kids room!
Rearranged Hudson's too!
(more my "thing" ...and loved the results!)
Shopping....
Getting close to "back to school" time...
supplies, shoes, clothes!
Filling...
My life with family....and friends...Those who enrich my life and the lives of my kids.
Contemplating...
Past...present...and future
Waiting patiently...
For Gods whispers in my life...and paying close attention to those moments...
Praying...
Lots and lots of praying.
and finally....
Finding...
summer fun for my kids in August, as much of it was lost in July.....
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| Hunter and friend at Miracle Ranch day camp...a week of FUN! |
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| No summer is complete without slip-n-slide fun! |
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| inter tubing! |
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| best buds! |
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| When your 10, you can go-kart!!!! Hunter LOVED it!!! |
All in all, a much better month for the 3H's and myself...
now I just have to figure out how we will possibly get back on a "school schedule" next week!
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Hudson Tyler
Our sweet angel!