I have had one of those days....
I am feeling so frustrated....so disappointed....my day has looked like this......
a hugely hurtful/disappointing phone call to start my morning...
a letter in the mail from insurance denying my appeal for swapping speech and o.t. for more
p.t..... (I WILL fight it!!!!!)
a call ....only to find out a good family friend has been in the E.R./ hospital, dealing with health issues
a call... from the pulmonary clinic passing me to our primary doc to prescribe antibiotic tabs and albuterol for Vegas (IF we go to Vegas!)....which means I have to pay the hefty copay.
Some days just really suck!
This is definitely one of them.
( I don't have it in me today, to update yet on the Saneto appointment :( )
**** I did smile today when I found this....
a piece of paper that Hailey was doodling on that said.....
"I love my brother's so much. all the Do Da days,"
Thursday, May 26, 2011
Sunday, May 22, 2011
The Clobazam report and Summer
Hudson has been on Clobabzam for about 4 weeks.
The first week he was only getting a 1/4 of a tablet (2.5mg) 2x a day.
I felt like I was crushing air...it was such a little amount.
We have gone up to a 1/2 tab (5mg) 2x a day.
I can cautiously (I am whispering) say that I have seen a significant decrease in frequency and intensity.
The frequency I am not as certain as I am intensity. Prior to Clobazam Hudson was having horrible
seizure days. He was screaming out with a hard tonic spasm followed by a cluster of spasms, usually 10-15 in a cluster and he would gasp with each one. Awful stuff to witness.
I would wake through the night as I would hear him seizure riddled throughout the night and day.
Because the intensity has improved, he is not gasping or crying out. I actually thought he wasn't having any tonic spasms (the tight gripping ones) because I wasn't seeing any, but I now realize he could be having them when we are not in the same room and I wouldn't know because he is quiet. I witnessed 2 on Friday and 3 on Saturday. Let me say......HUGE decrease if that is all he really had. On an average in a day he was in the teens, followed by those clusters I mentioned. I am not seeing any clusters after the tonic. A little staring into space after the tonic lets go, but no cluster of spasms.
Side effects I have noticed.....extremely sedated.
Anyone else with a kid on this med experience this sedation?
He is sleeping after giving the med in the morning and at night. When awake, a majority of the time he appears like his eyelids are very heavy, almost slits, but he remains awake. This could be also the result of just being on way too many meds. After all he is on Zonegram, Depakote, Lamotrigine, Vimpat, and Clobazam. All mind altering, brain numbing medications.
I have also noticed he will have more fussiness. Always in the evening. It is as if he needs to shut down. Last night he was crying and crying and as soon as I fed, medicated and laid him in his crib with music playing, he was quiet and settled.
Last week I reported all of this to Dr.S and Pam in a email and now we are scheduled to see them on Tuesday next week.
We have much to talk about.
Besides all of these issues, there is another big issue I need to figure out........ Summer.
Last year Hudson was more stable than this year. He wasn't so sick into the spring months like he has been this year. With all the med tweaking things seem more uncertain. I was so nervous last year taking him to Las Vegas, but everything worked out wonderfully. This year, my worries are a little different. We are planning to fly and the germs freak me out. He is still really gunky but then I think maybe the desert air would be good for him? We are unable to take seating devices, etc. and he is getting so long, it is getting hard for me to physically haul him around. My back is aching alot these days. So basically we will have his stroller for seating in the house and out...that's it!
Last year we left within days of the kids getting out of school. I have already decided we will stick around here until the end of June. Kids are out June 10!
The selfish side of me loves the thought of the pool, palm trees, the kids having their Daddy daily....and then there is all the Hudson issues that once again terrify me. I have done *nothing* to plan for this getaway. Last year at this time, it was all mapped out. I am hoping after Tuesday's meeting with his mito/nuero specialist, I will have a better idea of what direction I can head in trying to get to Vegas with the kids. There are so many issues to pan out....meds, supplies, formula, paperwork, needs for the plane ride, etc.
Hunter and Hailey are ready to head to the desert....I can't disappoint....and honestly....our spring here in the Pacific Northwest has been so cold and rainy, I could use a little sunshine myself....I am ready for a real summer!
Praying for a positive visit on Tuesday.......will try and update next week with what we come up with!
The first week he was only getting a 1/4 of a tablet (2.5mg) 2x a day.
I felt like I was crushing air...it was such a little amount.
We have gone up to a 1/2 tab (5mg) 2x a day.
I can cautiously (I am whispering) say that I have seen a significant decrease in frequency and intensity.
The frequency I am not as certain as I am intensity. Prior to Clobazam Hudson was having horrible
seizure days. He was screaming out with a hard tonic spasm followed by a cluster of spasms, usually 10-15 in a cluster and he would gasp with each one. Awful stuff to witness.
I would wake through the night as I would hear him seizure riddled throughout the night and day.
Because the intensity has improved, he is not gasping or crying out. I actually thought he wasn't having any tonic spasms (the tight gripping ones) because I wasn't seeing any, but I now realize he could be having them when we are not in the same room and I wouldn't know because he is quiet. I witnessed 2 on Friday and 3 on Saturday. Let me say......HUGE decrease if that is all he really had. On an average in a day he was in the teens, followed by those clusters I mentioned. I am not seeing any clusters after the tonic. A little staring into space after the tonic lets go, but no cluster of spasms.
Side effects I have noticed.....extremely sedated.
Anyone else with a kid on this med experience this sedation?
He is sleeping after giving the med in the morning and at night. When awake, a majority of the time he appears like his eyelids are very heavy, almost slits, but he remains awake. This could be also the result of just being on way too many meds. After all he is on Zonegram, Depakote, Lamotrigine, Vimpat, and Clobazam. All mind altering, brain numbing medications.
I have also noticed he will have more fussiness. Always in the evening. It is as if he needs to shut down. Last night he was crying and crying and as soon as I fed, medicated and laid him in his crib with music playing, he was quiet and settled.
Last week I reported all of this to Dr.S and Pam in a email and now we are scheduled to see them on Tuesday next week.
We have much to talk about.
Besides all of these issues, there is another big issue I need to figure out........ Summer.
Last year Hudson was more stable than this year. He wasn't so sick into the spring months like he has been this year. With all the med tweaking things seem more uncertain. I was so nervous last year taking him to Las Vegas, but everything worked out wonderfully. This year, my worries are a little different. We are planning to fly and the germs freak me out. He is still really gunky but then I think maybe the desert air would be good for him? We are unable to take seating devices, etc. and he is getting so long, it is getting hard for me to physically haul him around. My back is aching alot these days. So basically we will have his stroller for seating in the house and out...that's it!
Last year we left within days of the kids getting out of school. I have already decided we will stick around here until the end of June. Kids are out June 10!
The selfish side of me loves the thought of the pool, palm trees, the kids having their Daddy daily....and then there is all the Hudson issues that once again terrify me. I have done *nothing* to plan for this getaway. Last year at this time, it was all mapped out. I am hoping after Tuesday's meeting with his mito/nuero specialist, I will have a better idea of what direction I can head in trying to get to Vegas with the kids. There are so many issues to pan out....meds, supplies, formula, paperwork, needs for the plane ride, etc.
Hunter and Hailey are ready to head to the desert....I can't disappoint....and honestly....our spring here in the Pacific Northwest has been so cold and rainy, I could use a little sunshine myself....I am ready for a real summer!
Praying for a positive visit on Tuesday.......will try and update next week with what we come up with!
Wednesday, May 18, 2011
Gods perfect timing....
I can't say I understand it....
most of the time I think my timing on the way I think things should go would be perfect.
Usually in hind sight, I understand why something happens the way God intended...after all He is perfect.
I have a story to share.....
About 10 years ago, Paul and I had become really good friends with one of his co-workers and his wife.
As couples, we had much in common.....besides our husbands working for the same company, and doing the same job, we had no children, we loved cooking and entertaining, and getting together for game nights, etc.
We became pregnant with our first, and went through our first pregnancy together. We were both having boys and we ended up having our babies 5 days apart in August! Our get-together's quickly became all about our new babies. It was fun going through being new parents together.
Sometime within that first or second year, Paul left the company and the other couple moved to another state within the organization. We lost touch. We haven't seen, or spoken to them in 8-9 years......
I have been battling insurance for making an exception to our plan and allowing Hudson to continue to get in clinic therapy, past the 20 visits were allowed in a year. I was told how to go about this "fight" and had to compose a letter with Hudson's history, diagnosis, prognosis, etc, etc.
As I was typing up my letter, I decided to go to the umdf.org to get some good facts for my letter.
As I got on the web page, my eyes quickly darted to the right of my computer screen.
All I saw was "Hudson Tyler dies" I was somewhat paralyzed, as that is my Hudson's name, first and middle, exact same spelling. I had to click on it. I almost fell out of my chair with what I read. A little boy, a year older than my Hudson, with the exact same first and middle name, lost his life to mitochondrial disease. I never imagined there was another Hudson Tyler in this world suffering from the same disease as my Hudson Tyler....
as I read on, I realized I know this family....I know his parents....I know his brother.....this family was our good friends from 10 years ago! I called Paul right away.....read him the article....he was in disbelief.....he told me I had to find them. I jumped on face book....looked up their name and friended and sent a message to who I thought might be the person I was searching for. Within 5 minutes I get friended back, with a message that it was him, and left me his #. I called him and reconnected, and told him what I discovered and we shared our trials and this path we have been on with our Hudson Tyler's.
Paul got to reconnect over the weekend. It was pretty emotional for both of us. I am not sure why we discovered this so late....I wish we could have been walking this, and supporting eachother from the begining.
What I do know, is that God knows why it happened the way it did.....he planned this meeting perfectly.....
I wonder if those who have little faith can see something like this is not "by chance" or a "coincidence"....
Only God could work something like this......
What were the chances of the week of the death/memorial I went on the umdf site?
What were the chances we both named our boy the exact first and middle name with the same spelling?
What are the chances both of our boys would have the same disease?
Hudson Tyler.....
what a beautiful little boy.....my heart breaks for the family.....my soul rejoices for this boy.....
he is free from disease.....he is running, laughing, playing.....he is with Jesus.....he suffers no more.....
I know my Hudson is connected to their Hudson....there were two Hudson angels battling this awful disease, now there is a Hudson angel in heaven and there is a Hudson angel here on earth....
one day they will run free together!
Please keep our friends in your prayers......
most of the time I think my timing on the way I think things should go would be perfect.
Usually in hind sight, I understand why something happens the way God intended...after all He is perfect.
I have a story to share.....
About 10 years ago, Paul and I had become really good friends with one of his co-workers and his wife.
As couples, we had much in common.....besides our husbands working for the same company, and doing the same job, we had no children, we loved cooking and entertaining, and getting together for game nights, etc.
We became pregnant with our first, and went through our first pregnancy together. We were both having boys and we ended up having our babies 5 days apart in August! Our get-together's quickly became all about our new babies. It was fun going through being new parents together.
Sometime within that first or second year, Paul left the company and the other couple moved to another state within the organization. We lost touch. We haven't seen, or spoken to them in 8-9 years......
I have been battling insurance for making an exception to our plan and allowing Hudson to continue to get in clinic therapy, past the 20 visits were allowed in a year. I was told how to go about this "fight" and had to compose a letter with Hudson's history, diagnosis, prognosis, etc, etc.
As I was typing up my letter, I decided to go to the umdf.org to get some good facts for my letter.
As I got on the web page, my eyes quickly darted to the right of my computer screen.
All I saw was "Hudson Tyler dies" I was somewhat paralyzed, as that is my Hudson's name, first and middle, exact same spelling. I had to click on it. I almost fell out of my chair with what I read. A little boy, a year older than my Hudson, with the exact same first and middle name, lost his life to mitochondrial disease. I never imagined there was another Hudson Tyler in this world suffering from the same disease as my Hudson Tyler....
as I read on, I realized I know this family....I know his parents....I know his brother.....this family was our good friends from 10 years ago! I called Paul right away.....read him the article....he was in disbelief.....he told me I had to find them. I jumped on face book....looked up their name and friended and sent a message to who I thought might be the person I was searching for. Within 5 minutes I get friended back, with a message that it was him, and left me his #. I called him and reconnected, and told him what I discovered and we shared our trials and this path we have been on with our Hudson Tyler's.
Paul got to reconnect over the weekend. It was pretty emotional for both of us. I am not sure why we discovered this so late....I wish we could have been walking this, and supporting eachother from the begining.
What I do know, is that God knows why it happened the way it did.....he planned this meeting perfectly.....
I wonder if those who have little faith can see something like this is not "by chance" or a "coincidence"....
Only God could work something like this......
What were the chances of the week of the death/memorial I went on the umdf site?
What were the chances we both named our boy the exact first and middle name with the same spelling?
What are the chances both of our boys would have the same disease?
Hudson Tyler.....
what a beautiful little boy.....my heart breaks for the family.....my soul rejoices for this boy.....
he is free from disease.....he is running, laughing, playing.....he is with Jesus.....he suffers no more.....
I know my Hudson is connected to their Hudson....there were two Hudson angels battling this awful disease, now there is a Hudson angel in heaven and there is a Hudson angel here on earth....
one day they will run free together!
Please keep our friends in your prayers......
Sunday, May 15, 2011
4 years old! A small family birthday celebration
Lots has been going on the last few weeks...
but the biggest news by far is that our little warrior turned 4 on Saturday!
He had an interesting day....very few seizures up until about 3p.m. and then non stop crying from 3-10p.m.(as the pictures and video below will show) with seizures scattered in between.
I hated to see him upset, especially being it was his birthday, but we all know seizures don't discriminate....they hate no matter what day of the week it is!
He is on Clobazam and we are in the midst of the titrate....Monday we go up to the level we are to see what this drug will do...
so far I am seeing the old familiar tonic spasm but the cluster of spasms to follow has been harder and harder to distinguish. I would have to say frequency has also seen a slight improvement. The crying jags have increased since taking this med, and so have the "sleepies" ....he is asleep within 20 min of giving 5 mg at night and all through the day he appears to have a hard time keeping his eyes open.
If it would significantly improve seizure control, I will take the sleepy kid daily in place of constant seizures!
We kept the birthday small and family. The kids were very sweet to have written cards for their brother. I included video which is poorly delivered through my cell phone, but it was all I had available at the time.
We are so grateful to have Hudson...to celebrate Hudson...to be blessed by such a little teacher/preacher...to call him our own...we thank God every day we can celebrate his fighting life...
thanks to all who wished him a happy birthday through email, facebook, and even gifts sent to our home....we know what a gift he is to so many people, and so many are a blessing to him and our family as well!
So much more to update on but that is the latest on Hudson for now....
Life has been crazy.... in the mean time I am just trying to keep up!
but the biggest news by far is that our little warrior turned 4 on Saturday!
He had an interesting day....very few seizures up until about 3p.m. and then non stop crying from 3-10p.m.(as the pictures and video below will show) with seizures scattered in between.
I hated to see him upset, especially being it was his birthday, but we all know seizures don't discriminate....they hate no matter what day of the week it is!
He is on Clobazam and we are in the midst of the titrate....Monday we go up to the level we are to see what this drug will do...
so far I am seeing the old familiar tonic spasm but the cluster of spasms to follow has been harder and harder to distinguish. I would have to say frequency has also seen a slight improvement. The crying jags have increased since taking this med, and so have the "sleepies" ....he is asleep within 20 min of giving 5 mg at night and all through the day he appears to have a hard time keeping his eyes open.
If it would significantly improve seizure control, I will take the sleepy kid daily in place of constant seizures!
We kept the birthday small and family. The kids were very sweet to have written cards for their brother. I included video which is poorly delivered through my cell phone, but it was all I had available at the time.
We are so grateful to have Hudson...to celebrate Hudson...to be blessed by such a little teacher/preacher...to call him our own...we thank God every day we can celebrate his fighting life...
thanks to all who wished him a happy birthday through email, facebook, and even gifts sent to our home....we know what a gift he is to so many people, and so many are a blessing to him and our family as well!
So much more to update on but that is the latest on Hudson for now....
Life has been crazy.... in the mean time I am just trying to keep up!
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Hudson Tyler
Our sweet angel!