Latest happenings from a tired mom....

For the most part we are doing o.k.

Hudson never really seems to be all that great these days.
The gunky cough and congestion never really goes away. Some days it is better than other days,
but some days it is just plain bad! I have been using the albuterol more often than not....some days he
just seems like he is really struggling as he coughs it up and tries to handle it. Some nights I have just sat and listened to him breathe, wondering if he is struggling as bad as he sounds, afraid to fall asleep.
He is having about 3-5 seizures a day that I am seeing....no vomiting.....sleep varies lately, but he is always quiet in his crib!

When we saw Dr. Saneto, it was decided to spread out the morning dose of Clobabzam into 2 doses.
We split the 5 mg into 2.5 in the morning, than the other 2.5 mid afternoon, and then 5mg at bedtime.
It has helped with him not sleeping into the afternoon and he is not getting so cranky and irritable at night. Saneto also decided to wean him off the Vimpat, as he feels that  has done the least in the way of seizures.

It is a 5 week wean for that one med!!!

Everything takes forever and is such a process!

So when I asked him his thoughts about Vegas, he didn't have a whole lot to say, other than we have about a  month to try and get him stable as possible. Our hope is to see seizures remain under better control as we have seen with the Clobazam, get him off the Vimpat (as long as we don't see any changes for the worse) and then after the summer get him off the Zonisamide. We wouldn't mess with meds while in Vegas....we just need Hudson to be at a good baseline....I feel like I don't even know what that is anymore! I haven't seen stable for a good long time :(


I am still reeling over the insurance issues. I broke down on the phone speaking to the case manager who was suppose to help me with all of this. Once again I am back to a 2nd level appeal. It fries me!!!! I can't believe I have to put time and energy (I have little of both) into fighting for in-clinic P.T. once a week for Hudson. I wrote a letter, I had the therapists letter, I had Saneto's letter.....DENIED! This is not an unreasonable request, we pay a fortune for insurance and yet I can't get this simple, imperative need for my son?
There is nothing worse than feeling like your child is nothing but a file# to people.....
I know insurance companies like to ware you down...they make nothing easy.....there is very little humanity in this...If they knew Hudson...if I could make it personal, there is no way they could deny such a simple need....
but instead I am left with being told that because it is not in our contract, we are only allowed 20 visits per year, that is all Hudson gets....swapping is not allowed....no exceptions will be made.....
If I had a "potty mouth" we all know what I would say to that!!!!!!
So this is a major drain to my battery.....

My mom and brother have been traveling to Paris, Brussels, and Amsterdam. I have been taking care of her Golden Retriever puppy.....cute....but not so fun on a drained battery.
Obviously, my mom is a huge source of help and support for me, and her being gone almost 2 weeks now....
well I am missing her and her support/help....at the same time she so deserves a trip like this and I am glad she is having a fun adventure!

I have managed fairly well on my own....
there has been no Paul.....no Mom.....just me and the kids....but...
there are people in my life who I couldn't do this without....who walk through the rough days
and the good days with me....you know who you are and I am grateful for your place in my life.
I have come to realize in the past 5 years....it is not about the quantity of friends you surround yourself with, but the quality. I am very aware of who I surround myself and where my time and energy goes.

and so....
I have managed to still get out, and have some fun nights....with kids in tow!
A friend and I discovered a happy hour where we can bring our kids!! Nothing better than cheap wine and food that tastes good! One of our local coffee shops turns in to a wine bar in the evenings.....it is a win-win when no sitter permits and it totally works!!! So I have done that a couple times, and we did a BBQ at a friends yesterday......bowling.....movie nights....yeah, we keep busy!!! I like the kids to have fun in spite of whatever drags me down....plus I always have fun with them and seeing them happy is all that matters to me!


 
We are now winding up the last 2 weeks of school for the kids. I can't believe it! Another reason I am tired...all the end of the year stuff! I also am trying to get in some play dates for the kids with their friends from school because I know they will miss them over the summer.
We could leave as early as June 18 if we wanted....that is the last week I work until the fall.
I have done nothing to prepare....I feel uncertain....a part of me just wants to take off....a part of me is terrified....a part of me is too exhausted to do what it takes to get out of here.....I am one person juggling so much and I feel like it is too much, at least today it is....


I am hoping and praying Hudson shows me signs of stability....which would encourage me to get the ball rolling with everything else....or hire some one to do it all for me!!!! I wish...wouldn't that be nice!!!!!????!!!!!

one disappointment after another...

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,"

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!

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......

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!